Linda661 Posted June 9, 2006 Share Posted June 9, 2006 I really don't know what to do with this one: I think mom resents my advocacy on her behalf and my looking to her to make her own decisions about her options. Over the last couple of weeks she has been hit with alot, of course, but this is something else. All I've done is research, ask questions, and make her aware of her options so she can decide what to do in her own time. She was resentful and wasn't about to ask one question during the hospice consult meeting (that was ordered by her doctor). Now she resents that I brought to light a future treatment option for her that wouldn't have even been offered to her initially the way things were going during the last hospital stay (will get too long if I give all the details of that one) -- her doctor is now on board if she wants to do it (if she gets strong enough over the next several weeks). Yesterday she was so angry with me and said "you think I'm going to take YOUR Tarceva drug...." How in the blazes does this happen -- it's not my decision! I am just beside myself at this attitude when I am fighting for her to know her options....whatever she decides...... This is where she has lost my empathy and compassion big time. I'd even gotten her the counseling she wanted some time ago and she stonewalled and excused away that one too, now she's really depressed despite being on 2-3 different meds for that and anxiety.....there's not much more I can do with this situation. She wanted treatment when doctors said hospice, so I found her an option.......now she resents me for finding treatment(?) but she doesn't want hospice either(geez, she called them "the death squad" not long ago after that meeting, what would you think?) -- not sure on the hospice....maybe she does, maybe she doesn't -- she even had me find her an alternative nursing home option recently and she resents me for that after I do it (no move has been made, but she has an option if she wants it) -- what got her upset there is that the alternative home has offered to use their van so she can tour their facility herself...in other words, she can decide for herself and then if she liked it, she can be moved within 24-48 hours. I feel like I am being set up by her to go do things and then she can complain and get nasty to me about them later. My sense is she is living in regret that life has drastically changed for her and is hanging on to a past that just isn't there anymore. She needs to make some decisions on her behalf and she just won't from what I can tell. Easier to get angry at me than deal with it. Unfortunately, I won't tolerate being the brunt of this sort of thing -- that just crosses the line with me, family or not. I can support like crazy, but don't condemn the messenger for goodness sake!!!!! Linda Quote Link to comment Share on other sites More sharing options...
flwrjunke Posted June 9, 2006 Share Posted June 9, 2006 ((Linda)) I'm so sorry for what your are dealing with. It does sound like she's having regrets or just really scared. With you being the one that is there, and so close, she's just taking out her frustrations on you. I can understand that, but it doesn't make it ok or any easier for you. Prayers for you and your Mom. Patty Quote Link to comment Share on other sites More sharing options...
hollyanne Posted June 9, 2006 Share Posted June 9, 2006 Linda- Just hang in there and cut your mom more slack than you could ever imagine! She has to come to terms with all of this in her own head, medications make everyone a little whacky, her body is going through so much, etc....I know that you know all of this. She loves you more than anything...give her a little break. Don't talk about treatment, about the cancer, let her bring it up. You are not going to lose anything by giving everything a break for a day or two. This isn't your mom lashing out, it is the cancer. Your mom is "in there" and will be back. I am sorry you have to see her like this, I know it sucks. Love, Holly Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 9, 2006 Author Share Posted June 9, 2006 Ummmm, this is my mom, not the drugs or the cancer (though neither of those things help in the mix either). Mom has always avoided making serious decisions for herself -- now she has to. Linda Quote Link to comment Share on other sites More sharing options...
Treebywater Posted June 9, 2006 Share Posted June 9, 2006 Whether she's avoiding making decisions or not, I wonder if maybe what she's feeling profoundly right now is a lack of control. I don't know what it's like to have cancer, and I don't know what it's like when things are going badly with it, but I can imagine that it would feel like everything was suddenly ouf of my hands and the life was out of control. You've done a wonderful job of advocating, and digging up resources for her. You can't control what she does with them, and you can't control how she feels about them being presented--be gentle with yourself and know you've done what you can. Be gentle with your Mom and remember that this animal is bigger than her, and scary as hell, and has taken pieces of her life away that we, as kids, can only imagine. And one of the things that is wonderful and terrible about caring for our Mom's in this situation is that they are STILL our Mom's. They can still push the buttons, they can still irritate us faster than anyone on the planet. It can be so frustrating going through stress with them and the coping mechanisms we know and... don't always love. (((((Linda))))) You are a wonderful daughter. Just keep letting your Mom be where she is at. Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 9, 2006 Author Share Posted June 9, 2006 You hit the nail on the head with the lack of control thing: that is definitely part of it -- I see that in how mom is about how her room is kept at the nursing home: everything has to be in an exact certain place in an exact certain set of steps or she freaks out -- that's all the immediate control she has right now. She gets mad at the staff for it and me too when I help her put things away there. I certainly understand that one -- that part doesn't bother me in my support of her. It's knowing how that feels (and I do from my own personal experience....the no control thing) is why I have advocated so, so hard -- to give her some semblence of personal power & control when things are so out of control, whatever direction she wants to take; options were darn near taken completely away from her recently in that hospital.....and depending on how this all goes, her life as a survivor can become an all-fired mess in a big hurry here from a personal finances/home stance: she didn't know what to do with that before dx; I'm all she's got there to see to it that things are managed properly for her future. Fortunately, I'm trained for that and I can do it exceedingly well as long as I am given enough time and attention to put to it -- a lot of daily frustrating garbage is happening just dealing with the immediate needs of this dx at the moment. Problem is, what I see is....give her life-control options as they exist now and she doesn't seem to want them....even though she does want them initially with me. Probably never should have posted this topic, but there you have it. This topic is what is the most difficult for me to deal with, with everything else on my plate (and what I've said here isn't even all of it). Linda Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 9, 2006 Share Posted June 9, 2006 Sorry you don't feel appreciated, and I understand your frustration. First off, it will never be what it was -- you and your mom must live into the new "norm" and make the best of it, or be miserable. The fantasy is over. This is reality. As others have said, your mom is angry, scared, tired, etc. and is lashing out because of it. You have done an excellent job as advocate and caregiver. Keep it up, regardless of the criticism. You know what you are doing is right. What your mom does with it at any given time is up to her. With time, she may mellow, or she may not. All we can do in this life is our part, appreciated or not. And with knowing that we did what we could, we can go on. You can come here anytime and vent your feelings. That's part of what we do for each other. And, you must also take care of your own health and well-being. Hang in there. Plenty of info and support here. Don Quote Link to comment Share on other sites More sharing options...
Treebywater Posted June 9, 2006 Share Posted June 9, 2006 No, no, no... You absolutely SHOULD have vented here. I'm sorry if I got too advicey. I worried about that from the second I hit 'send' on my reply. It IS hard, and it IS frustrating. Especially when there is a lot on your plate. It's hard to stay patient and be in perspective when it seems like your whole world is chaos, and you are just so worried about your loved one. That is something I very much DO understand. So I will say now, what I should have said in the beginning--I hear you. I know it's hard. I care and I support you. Praying for you and your mama. You ARE DOING A GOOD JOB! Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 10, 2006 Author Share Posted June 10, 2006 Oops.....no, I know I am appreciated here....didn't mean to give the impression that I thought otherwise (it's just a hard topic for me to share as I work through it) -- just dumping my head as your feedback sparks other things I've thought of along the way. All of you are helping, really. Linda Quote Link to comment Share on other sites More sharing options...
purplelady47 Posted June 10, 2006 Share Posted June 10, 2006 Hey there Linda ~ I am so glad you posted. Your words gave me great insight to many of the things my daughter might have to deal with. I am so very grateful. May I give you a little insight into my thoughts as a patient? I've always been very in control of my life and have been able to decisions after reviewing all the necessary data. Then came cancer and I am finding that I have a real difficult time making any decisions. I say I want to make a decision, I do a whole bunch of thinking and then I decide not to make a decision, which, in my pretzel logic thinking process, is making a decision. Go figure! I know that I am frustrating not only myself, but also many of my friends, who are sadly mourning the "old Pam". My inability to make a decision has not affected my daughter yet, thankfully. My daughter and her husband are talking about moving here to help me. Part of me thinks "No, don't move, live your own life. I don't need help." And another part of me is saying "YES!!! Get here NOW!! I need the comfort of your presence in my life." From my perspective as a Mom, I don't want to be a burden to her. Yet, I want the comfort of her presence. Too bad I can't have it both ways, you know? I haven't been through half the stuff your Mom has dealt with since her diagnosis and there are days when I feel pretty overwhelmed with all this cancer stuff. I've been able to deal with my treatments and doctors without the level of support and advocacy that your mother has needed. Between her illness and just the whole "I have cancer" thing, I am not surprised she is getting nasty. It's just one of the ramifications of the disease and I've been lucky that I haven't been nasty to those I love yet. I dealt with a very nasty and very ill Dad for many years. Your hair would stand on end if I told you some of the nasty things he said and did to me as his illness progressed. He hated his life and blamed me for everything that was wrong, starting with the death of my Mom. His nastiness really hurt me and it took me a long time to realize that his behavior wasn't my much loved Dad, it was his illness. I had to learn to put aside the ugly stuff and reach into my memory for the Dad that I knew and loved. I know you are stressed, frustrated, angry and probably pretty hurt by your Mom's words and actions. I felt that way with my Dad and then on top of that, I had great guilt because I of my feelings!! Yeesshhh!! It was a nightmare of emotions!! It's hard not to take this all personally when you are doing your absolute best to make your Mom's life as comfortable as possible and make beautiful memories together. I don't have any advice for you other than if you find a magic wand, please feel free to use it immediately. My Mom and I used to work on lots of projects together. We worked well and hard as a team. She once told me that the first and most difficult job we ever did together was the job of her laboring to give birth to me. My Mom was wrong - the most difficult job we ever did together was the final task we performed as a team - the job of giving some meaning and peace to the last months of her life. You are doing a wonderful job of taking care of your Mom under difficult and stressful conditions - emotionally and physically. Sending you strength, courage and serenity, Pam in FL Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 10, 2006 Share Posted June 10, 2006 Quick personal thought. Fear Of the Unknown caused by wrong decision?! Ya know what I mean?! just a quick thought. Skimmed article hopeyou are well!!! Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted June 10, 2006 Share Posted June 10, 2006 Linda, This is DEFINITELY where you need to come to vent these things. Just getting it out should help you feel better. I'm sorry that your mom is taking her frustrations out on you. My mom and dad have been fighting a LOT lately over totally stupid things (they never did that when I was growing up). And you just want to shake them and say "Lets spend the rest of your days here on earth in peace!" I'm sure this is something you want from your mom as well. Just try to be extra-patient with here. I'm sure she is angry that she even needs to make these decisions and would rather be making the decision of where to vacation, should she buy the pink dress or yellow one, or what should we have for dinner. And part of it is also a bit of denial. If we don't make these major decisions maybe its not really all that bad. Hang in there, you are doing a GREAT job. Just remember to take care of yourself as well! Karen Quote Link to comment Share on other sites More sharing options...
karenl Posted June 10, 2006 Share Posted June 10, 2006 Dear Linda You know your Mom better than anyone, so her ability or otherwise with regard to decision-making is something you understand better than us, but Randy's words hit home with me. We all know that some treatments work well for some people, and not at all for others. I know that I often look back and wonder if we'd done things differently, or in a different order, would it have made a difference to the outcome? Sometimes people find it easier to be indecisive, rather than select a course of action only to find that it was the wrong one. And let's face it - the consequences of making a 'wrong' decision with regard to cancer treatment can be pretty catastrophic. I posted a while ago about a condition called 'learned helplessness'. It is a psychological term that has been used to help explain why some people stay in abusive relationships, and why concentration camps were able to flourish in WWII. I think it may also be quite pertinent to some people following a cancer diagnosis - particularly advanced cancer in which the prognosis is grim. People become conditioned to thinking that it doesn't matter what they do, they will not be able to save themselves, so they do nothing. Just a thought...... I know its hard for you. Wishing you and your Mom all the best. Karen Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 11, 2006 Author Share Posted June 11, 2006 Thanks everyone for your support and input during this really difficult time (is that an understatement or what?). I probably sound harsh in the moment, but I am spending lots of time as the days go by re-reading what everyone is saying here -- gradually it's making more sense, sort of. Darn, how hard this is!!!!!!!!!!!!!! Went to be with mom today for most of the day and what she is doing is talking about everything else other than the obvious that sparked this thread, but tears are flowing from her eyes while she does that. The only thing close to this issue she said at one point was feeling hopeless with a 10% chance of anything being effective (she got that from the last hospital stay discussions from the docs.). I am just waiting for her to take the lead on this at this point -- I am not volunteering to go down option roads with her anymore right now....she already knows what those are. I think she's processing her options somehow still. I'm just listening right now (if things get ugly, at least I can gracefully leave right now....they didn't today). Pretty hard to watch the tears and have her not want friends to come over to see her....she says it's not that she minds them seeing her without hair or anything, it's that she doesn't have anything to say to them (more tears come from her with that statement). I am sooooooo tempted to let the friends go over anyway, because so far when they pop in unannounced (and I knew nothing about it to stop it by her wishes), I swear it helps her (and she hasn't gotten angry about it yet). She's so depressed.......but I can't do anything further about that as an advocate until she makes her decision Fortunately, I don't find any guilt or shoulda' woulda' coulda' stuff going on in me -- comfortable that I have done all I can here, whichever way things go. Linda Quote Link to comment Share on other sites More sharing options...
TamHol Posted June 13, 2006 Share Posted June 13, 2006 Hi Linda, I see and feel your frustration with your note and venting. Although I can relate you have to take a step back ...... this is her fight! By that I mean your good intentions and thorough research for helping your Mom are not going unnoticed. But there is a feeling of "too much reality" or "in your face information" that may be her cause for outbursts. Although you are doing exactly what she asked for, there is a difference between knowing something and hearing it. One is way more real then the other, and I'm finding with my Dad. Real is not what he wants right now, he wants to know what is possible but he doesn't want it to be attached to his every waking moment. I can understand that, they are both living this illness and sharing more than enough of their day with it. In short, listen to her ideas and wait until she asks for what information you've found. Sometimes an idea is just that ... an idea! Quote Link to comment Share on other sites More sharing options...
kreed70 Posted June 13, 2006 Share Posted June 13, 2006 Linda~ I feel your pain!! This is the place to vent! In fact, I need to get some other stuff out here to get some help from everyone! Kelly Quote Link to comment Share on other sites More sharing options...
Char81062 Posted June 13, 2006 Share Posted June 13, 2006 Hello Linda, My Mom was just diagnosed with Stage IV Small Cell Lung Cancer and she too wants to hide from the world right now. I am told she will find her way from some of the other wonderful people who have answered my inquiry. My Mother has always been very in control of her life and I've learned that from her so when I received her Dx news I immediately went to the internet and looked over her info the Dr sent with her. I saw how other people with the same grim dx were fighting and winning. Sometimes I think we can't understand why a patient wouldn't do everything in their power to fight this disease. I think you have done everything you can think of and now your Mom has the info and she must make decisions for herself. Sometimes indecision for what it is worth is a decision in and of itself. My Mom has said to me that I must respect her decisions and although she has elected to start Chemo right now that may change. I do not want the precious time I do have left with my Mom to be filled with arguments because ultimately I have to respect her enough to make those decisions even though they may be extremely hard for me and my family to understand. For now I pray that God guides you and your Mother through this ordeal and whatever it brings you carry no guilt. Charlene Quote Link to comment Share on other sites More sharing options...
ma's kid Posted June 13, 2006 Share Posted June 13, 2006 Linda, I really don't have anything to add to what has been said, except I am so glad you posted about what is going on. Your post helped me understand some of the frustration that both the caregiver and patient experience. My situation is a little different than yours but my mom *has her moments* as well. It helps me to remember that she doesn't have my father to bounce stuff off of..and it's just us kids that are the sounding board. Saying prayers that things calm down and remember that you are loved and doing a wonderful job of advocating for your mom... One of the blessings in all of this..we all have each other for support. Love, Libby Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 14, 2006 Share Posted June 14, 2006 The strongest urge for a person is to live. People will do anything they have to to stay alive. Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 14, 2006 Author Share Posted June 14, 2006 Mom's wrestling with the quality of life she faces right now (yesterday, anyway). Not that great considering what she'd have liked it to be. Doesn't appear so far that she is regaining strength or feeling any better since chemo/rad. stopped, but we have a couple more weeks of rest before seeing the onc. again. Restorative therapy is gonna' start up again to help her with the strength/mobility issue -- let's hope she will follow through with it....it stopped when she quit wanting to do it before. I got it re-initiated yesterday when she said she wanted to do it again and asked me to get it going for her. She's eating well -- much better than before. But it bothers me that she reports having trouble taking deep breaths when she lays down, but O2 sats remain fine when laying down and feeling this way. She says she just feels too full in the tummy when this happens. She's considering having me move her to a different skilled nursing facility: there are many pluses for her in making such a move -- she's thinking about it and knows I'm letting her make up her own mind. What scares me if she wants to make the move, is that it is to the same facility where my dad passed -- that can't play out well in one's head, but it's her decision. I did remind her in our conversation on this (was on her lead) that the facility offered to bring her there for a new tour before she decided anything -- might help her gauge her emotional reaction to being there: mom is very prone to anxiety and panic attacks these days. Certainly wouldn't want her to get there and regret her decision, considering I can't exactly bounce her around facilities on a regular basis (plus the one she's in and the one she's considering are the two best facilities in our area, both offering excellent care support). Anyway, that's the current scoop. Still waiting and watching. Linda Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted June 14, 2006 Share Posted June 14, 2006 Linda, You are doing a great job. I don't envy your role right now at all. Depression can cause confusion, circular thinking, and ultimately indecision. Anti-anxiety meds would/could help so much. Has she been offered this assistance. I remember living in a state of hell when the stress got too high; I didn't know if I was coming or going. It is a nightmare to muddle through the dark waters in a state of confusion and distress. I am glad that you are giving over the reins. She does need to know she has options. It sounds like she is attempting to move forward in a very positive way by going to work to improve the quality of her life. Blessings on you both. Cindi o'h Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted June 14, 2006 Share Posted June 14, 2006 Linda, I know tha when we have gone through these periods of "indecision" with Dad, they have been some of the most difficult moments. Being the "barge" into things head on and tackle them type of person that I am his need to wait and process things at time has been really hard for me. I have to say though that after a couple of days Dad usually calls me wanting to talk. Sometimes I am suprized by how much he has listened and truly processed when I thought he was just refusing to even listen. And other times I have been suprized to find that even I somehow wihtout knowing needed a few days to step back and reapproach. I'm glad you continue to vent here -- I read your post and find myself nodding in agreement and truly understanding your frustration! Hoping thing manage to "settle down" for you and for your mom. It does sound like she is trying slowly to be the process of moving forward. Know that you ARE doing a great job - and though she may not express it as much as you might need -- she DOES appreciate ALL that you do! Best of luck to you! Praying for some "easy" days ahead! Cindy Quote Link to comment Share on other sites More sharing options...
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