Mskim Posted October 21, 2005 Share Posted October 21, 2005 Hi, My name is Kim. I am a 35 yo stay at home mom of 3. My 57 year old mom ELAINE was dignosed with nscl with mets to brain in July. This comes on the heels of my Dad getting killed in a motorcycle accident just 2 years ago. My life has certainly gone from 'charmed' to 'hell' in a very short time. I grapple with where it is best to spend my time, I spend as much as I can with her and try not to neglect my home and family but it is so hard to leave her. My Step Dad works... has to work to save his sanity. So I hate for her to be alone during the day. Some days she is so weak she can barely walk to the bathroom and she shakes and jerks uncontrollably. Other days (few and far between) she is a glimps of my mom, cooking or shopping like we used to but it is still not her. We have been comparing my mom to a 6 year old with a drivers license. She is there yet she isn't. She is trying so hard to hang on to her independance, driving when I know she shouldn't and even camping with her friends without my step dad to care for her. It makes me crazy to know she is away, too far for cell phone service and with people who may not know what to do to help her. On the other hand I want her to do whatever gives her peace. I wish I could say do whatever makes her happy but she feels no joy. I know the people she spends time with will make sure she is safe just as I would, maybe I am jealous, maybe because the time I spend with her is to help her with basic needs instead of fun things like sitting around a campfire. She also tends to be pretty mean to me and my step dad and I when it suits her. She hates to take anything to help her sleep or stop shaking because they make her drowsey and she despises having to take antidepressants. SHe blames us for making her take these drugs even though it helps her. Her personality has changed so much with treatment and drugs. I have always been very close to my mom, never living more than a few miles from her and talking to her almost daily. I have adopted these things to apply to my life: ONe day at a time, I'm doing the best I can, and one of my favorite phrases latley is "thats not helpful right now." One day at a time is for when I look too far ahead at my daughters wedding or my sons graduation and knowing in my heart she will not share it with me. Who will be left to answer the questions about the past and who will be there to show me how to do things like gramma showed her? I am doing the best I can is for those I disappoint if I am late or forget or can't help in some way that I used to be able to. Last but not least is THATS NOT HELPFUL is for those who say things like "maybe the treatment is worse than dying" and "you know, if you smoke for 40 years it's bound to happen" and all of the other things we all hear all the time. This doesn't mean I am well adjusted, I have many Zanax moments but whatever gets you through the day right? Thanks for having me here. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 21, 2005 Share Posted October 21, 2005 boy, Kim You got alot on your plate. Your mom is so young. I will be betting that she will have a huge turnaround after the effects of the decadron wear off. That stuff can do nasty things to the brain. I can certainly relate to what you are saying. Many of us have gone through it either ourselves or witnessing a loved one who is suffering from a steroid psychosis. Shineladysue sent a link to me that was so helpful in understanding the psychosis part. I am hoping that I can get her to send it to you too if she still has it. It won't help your mom, but it might help you to understand what your mom is going through. And that it is temporary. In time, she will be back. Sorry this welcome is so long...I can just sense your loss. I just want to give you some hope and confidence that there will be a great change in your mom and that you WILL have her back! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 21, 2005 Share Posted October 21, 2005 Hi, Kim, and welcome! Like your avatar. Your mom is depressed from having cancer, and she does crazy things because of that and the brain mets. Be patient and forgiving. Fron where I sit, anything she does for herself to enjoy life while she can, I am all for. I understand your wanting to have as much of her time, but for her, she needs to do what she requires to cope. Best wishes to all of you. Don Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 21, 2005 Share Posted October 21, 2005 Welcome Kim, glad you found us. Donna G Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 21, 2005 Share Posted October 21, 2005 Hi Kim and welcome. It's tough, no doubt. I am sure that the brain mets and meds are the cause of the differences in your Mother. No advice except to love her. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim Welcome here. I feel your pain in all your mom is going through. It certainly is hard on you to see such a change in her. But like Cindi said it is the steroids that is doing that to her. Hopefully, this is only temporary and you mom will be back soon. Just keep doing what you are doing. See her as much as you can but do not neglect your family, as they are so precious to you. I am glad your mom is camping and I also understand your feeling about her being so far away. But you did mention they will take care of her. I hope she is having a good time as this is good for her soul and also her independence to be able to do that. Take care, keep us posted. Please know that we are always her for you to help you cope. Maryanne Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim. I sent you a PM private message. You can check it by going to "my mail". Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 22, 2005 Share Posted October 22, 2005 Welcome, Kim! Really glad you found us but sorry there is a need. I hear what you are saying about the change in your mom's personality...we have seen a change in my mom as well. Super bouts of confusion, anger and lots of little things that make it seem *just who IS THIS person!* I hang onto once the chemo is over, perhaps most of the personality changes will vanish! Please know that your mom and you are in my prayers, ok! Your mom is so very lucky to have you in her life..you sound like a wonderful, loving daughter and I believe, on some level your mom knows that and feels your love. This is a difficult path for all of us to be on but your attitude is wonderful! Be good to yourself, Kim..as that is important as well. Libby Quote Link to comment Share on other sites More sharing options...
jorja Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim, I just wanted to say welcome and that you will have A LOT of support here. I am sorry that you are going through this with your mom. Just know that you are not alone. love, jorja Quote Link to comment Share on other sites More sharing options...
Don M Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim: welcome . I see that your mom has had some shrinkage of the tumors and is undergoing more treatment. That is good. If the brain mets shrink enough, and there are not too many, I think you can do gamma knife surgery after whole brain radiation. Ask your mom's oncologist. I think that there is a reason to hope that the brain mets can be eliminated and then your mom can come off the decradon and have a more normal life for a while. I hope the best for your mom. Don M Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim. Welcome aboard. Stay with us and we will get through this together. We will laugh with you or cry with you, whatever you need. You are among a group of people that cares. Anything you need to know, someone here has been there...done that. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim, Welcome to our family. My heart really goes out to you. I know it is hard enough to have your mom have cancer , but when the medications alter her personality it makes it even harder. Cindi mentioned an article I have about steroid psychosis and I would be glad to give it to you, but it is a pdf file and I don't know a way to attach it here. If you would like to email me by clicking the email button at the bottom of my profile , I will be glad to attach it to email. It was just something that I found on the net, but it helped me to understand my husbands behavior when he was on steroids and other meds. I can tell you that the patient does tend to take things out on their family . As hurtful as it is to you, they have no control over their behavior. As in my husband's case, they can become quite paranoid also. Knowing this won't make it go away, but it will help you understand and know what is usually done about it. In the meantime, you have found a group that is very kind, compassionate and willing to help you . Looking forward to knowing you better. Sue Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 22, 2005 Share Posted October 22, 2005 Hi Kim,welcome to our support family.You will find many knowing and caring people here. Cancer and the drugs used to fight it can cause many crazy things to happen.It makes being a caregiver a very difficult thing. As Don Wood often says it is important for the caregiver to take good care of the caregiver. Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted October 23, 2005 Share Posted October 23, 2005 Kim, Welcome. I'm so sorry to hear about your mom, but I'm glad that you found this support-group. Ellen. Quote Link to comment Share on other sites More sharing options...
bunny Posted October 24, 2005 Share Posted October 24, 2005 hi Kim. you have come to the right place for support in all this scary LC stuff. I am happy to hear your mom is feeding her soul, and at the same time I completlely understand your fears. the best thing you can do is keep talking about them and stay in the day. you're doing greaT!!! nice to meet you. xoxo amie Quote Link to comment Share on other sites More sharing options...
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