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SC7454

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  1. It's hard for me to talk about details....but mom passed on 11/6. She just really went downhill the last week and fast. She finally accepted a catheter on the 2nd as she was in horrible pain when I would roll her to change her, I can't even tell you much I cried when I would move her. She passed peacefully after she finally accepted liquid morphine the morning of the 6th (wasn't making any sense verbally) and passed that night at 7:56pm. She had been struggling to breathe that day (even though we were giving her oxygen), and calmed down when I gave her the scheduled dose of morphine at 7:30pm. I was there but stepped out of the room for about 30 seconds after she seemed to be sleeping (hospice nurse told me that day that it would be maybe less than a week, so I had no idea it would be that night). I came back in and she was gone. She was absolutely wonderful/sweet/kind/loving to me the last week or two, which made it more difficult....but I'm so thankful for that. That morning she was hot (kept going back and forth from hot to cold) and I kept putting cold washcloths on her forehead and the only time she was making sense is when I could put the washcloth on her head and she would say, "Oh Stephie, that feels so good." Makes me smile to think of her saying that. She looked at me and said, "i'm dying honey." Those were the only times she was making sense that last 2 days. I guess she knew better than the nurses. AND, you all were right, I have no regrets and am glad that I stuck through it with her. Her wake and funeral were lovely and I think she would be happy with it all. I found a sheet where she had wrote 'songs I want played at my wake." So a friend of mine put them all on CD. I miss her...even through it all. I remember when I was a little girl and when I would leave for school she used to say 'Open your pocket." I'd open my pocket up and she's stick her hand in my pocket and would say, "i've put a little love in your pocket. If you get lonely, you just pat your little hand on your pocket and remember the love I put in there." She was a good mommy!
  2. She hasn't had any breathing problems yet...just pain and the liver/'whatever else is there now' mets pressing on her spine and her stomach/diap. because she throws up anything now. I've noticed while she's sleeping that she will take a giant breath and then some really shallow ones and then it looks like she's not breathing and it will start all over again. She won't let me bring her one friend here and my dad (her ex-husband who she said she wanted to make peace with about 2 months ago and keeps putting off seeing him), so I guess this is the way she's choosing to go.
  3. Oh, I'm so sorry for your loss. I'm sure your mother-in-law knew you were there with her at the end...I pray your family can help each other through this difficult time.
  4. Yes, I'm working from her home on my laptop (my company is really great). So, in a sense I am taking time off. She sleeps all day now. I don't know what else I can do because she doesn't like me to talk to her, she just wants to be left alone. I've realized that the ideas I had about my mother and I coming to some understanding or thinking about good times just isn't going to happen because she won't let it.
  5. Congrats from one Stephanie to another! It's great that you can share in the joy of your news with your mother. Stephanie
  6. I agree with Ellen...he'll ask for more details if he really wants to know. You are simply trying to protect him from information that he may not/can not handle. You know him better than we all can speculate and I say trust your instincts. Good luck, I'll be thinking of you.
  7. Most of you know from my recent posts how things are. Well in the last few days, mom has been sleeping much more than normal and eating/drinking so little. As of yesterday, she was down to about 2 bites of food and a sip or two of water..and she threw that up. None of the nausea medication seems to be helping (even though the nurse is trying everything; disolving tablets, etc). Today has been really strange. She threw up when she woke up, and then has been sleeping all day...I can wake her up but she falls asleep in about 20 seconds after that. She's never slept this much before. Is this just the dying process? I know they say that they start to sleep a lot...but does that mean 2 weeks, 1...who knows??? She's ate one cracker and 1 sip of water. The nurse says she thinks that the mets are pressing on stomach, everything (they were already pressing on her spine, that's why she can't move anything below her waist). She's being kind of general about time and I'm so worried that I'm not going to be here when she dies. I just feel like I'm guessing here...anyone else ever felt that way that lost someone to this horrible disease? Can anyone tell me how this ending part went for them (if it's not too painful)?
  8. Thank you for the suggestion...it's funny that you mention the air mattress. One is being delivered tonight and we are putting it on her bed tomorrow when the nurse comes back.
  9. Unfortunately, she no longer has control over her bladder. She can't feel anything below her waist at this point. She can't move anything whatsoever below her waist...toe wiggle is really minor (hardly can tell). The nurse just came about 30 minutes ago and tried to talk her into the catheter and mom said no way. She's had a catheter a couple time before (in our previous visits to the hospital) and said it was really painful (other people have told me it's not that painful, but who knows how people handle discomfort and pain). I told her that she's got to let Jim (her male friend) change her at night..and she said yes, but I know it won't happen. ugghhh
  10. THank you so much for all the kind words on all my previous posts. This site is such a source of comfort and I thank God for it. Hospice came on Thursday and she signed the papers (she wasn't happy about it). The nurse came on Friday and we got her in the hospital bed. My mother's male-companion (boyfriend for 12 years,off and on) is back, (Thursday night he had told me it was his last night, but that's another story) so at least I have nights away from here for a small break. Mom won't let him change her (no more transports, which she hates and says is our fault because we don't want to be bothered...boy do those words sting, but her body is shot and she can't even raise her leg or wiggle her toes...so it's not safe), so I change her as soon as I get her in the morning which kills me that she'd rather lay there wet than let him change her. I change her before I leave every day at 6-7pmish. We had a good talk Friday night at 2am and she told me she was mad at the world, not mad at me. She said that she sees people laughing and smiling outside the window (the bed they brought is by the window) and want to scream, 'what are you smiling at, nothing is funny?' She is down to eating about 1 bite of food a day, and the nurse says that we can expect she will stop eating in like a week. Her head has been hurting her for a couple days now (i'm sure it's the brain mets). She's dozing more all the time, but it's not a deep sleep, and she keeps refusing her morphine pills (to regularly take them). She'll take it one day, but not another. The nurse said she'd tell me as soon as she sees things changing...I just keep feeling like it's soon. I have no idea and she said it's hard to tell. The wondering is driving me nuts...2 weeks, 3? 1 month? It's so hard when she begs me to get her out of that bed, and I can't. She's miserable and there is nothing I can do to help. I tried pillows to shift her weight (she's a small thing), but she hates that too. I tried different ways to move her so she doesn't get sores and she can't stand that either. What do you say? So I tell her I'm sorry she's going through this and she just gets mad. The nurse says we need to do a catheter because it's not good for her to be wet at night, but mom said she'd rip it off...she said no way. I'm on xanax now, and I have to say it's been a gift...I'm not crying or falling apart anymore and I feel like I can breathe much easier when I come here (used to have major anxiety beforehand). Thanks guys...
  11. I know someone on this topic has said that I should tell her the truth. I didn't take offense to this at all, because I have. The only thing she doesn't know is the 'less than 2 months' thing. Which by the way, the Dr. said yesterday (to me) is looking more like a month. I've told her that the Dr. believes the cancer is pressing around her spine/and or nerves around the spine which is causing everything below her waist to be numb. The Dr. even told her that a week ago and she told him we were all wrong. First her excuse was that it was the chemo, then it was the Neupogen (spelling?), now it's the morphine pills doing it to her. She's still in complete denial. I've told her I simply cannot do this by myself. Everything that was mentioned, I've tried. Well, last night I dropped her around 2am. I was trying to lift her from the couch to the wheelchair and I made it, but then she slipped off the wheelchair. We got into it because she said I was worthless and weak, etc. etc. and god help me, I responded and not kindly. It's like I have to get mad at her and tell her she is being a small child for her to calm down. I feel badly but the thing is, my mother was never a mentally balanced/nice mother to begin with. I know cancer makes nice people mean sometimes, but it also makes mean people meaner. And that's what is going on here. I couldn't get her back-up right away and I told her I was going to call 911. She said, 'Don't do that to me,' and I told her that if I didn't call 911 I was going to call hospice today. She didn't say anything. 20 minutes later and causing her a lot of pain, I got her back on the couch. As of this morning, when I tried to talk to her about hospice she said, 'Go ahead and get the paperwork, since you all want it so much.' So I called hospice and they are coming here at 12. If she has to make me the bad guy, so be it. So at least we'll get things rolling. She keeps mumbling things like, "I don't know how you think someone is going to do this better." I keep telling her I'm not leaving (even though she told me she needs a break from me, but it's only me and her male-friend here and he takes 5 nights a week and I take days and 2 nights a week....how am I supposed to give her a break??) and I am not turning over her care to someone else. I'm happy we are making progress, I just feel really raw and mad. I semi-liked my mother before all this even though I know she had issues. But she is still my mother. Now, I really am mad at her...that's the only thing I can think to say. And I resent that I couldn't at least still semi-like my mother, now I feel this way. Don't get me wrong, I love her...but I don't 'like' the person she is. I'm completely different from her. She's pushed everyone away her entirely life, which is why it's just me and her male-friend now...she's ruined many friendships throughout the years. Last night I begged her to let me give her a morphine and she just layed there all night whimpering and wouldn't take one. It's almost like she likes to suffer and prove she can handle it. I hope I'm not offending people here, but that's always been my mother. Yes, I know I need counseling when she passes. Other than my relationship with her, I have many healthy relationships in my life and am successful at what I do. Now, if I can just forgive.
  12. Thanks so much for the kind words. Yes, her Dr. talked to her for three weeks straight (1 appointment per week) about hospice and she still said no. She keeps saying she isn't going to die, and it's so sad to watch this denial. She blamed her legs on the morphine today (30 mg pill every 12 hours)....which has nothing to do with it. She can't accept it's the cancer. She told me that for the last year she kept pretending she didn't have cancer and that's how she got through it.
  13. First off, I loved this board when my mom was first diagnosed (hard to think that was a year and a few months ago). I dropped off this board because I was so busy trying to take care of her, do research, fight fight fight....all the things caregivers do. Well, you all welcomed me back and have been so wonderful and I just want to say thank you. Well, we told her the night before the hospice person (they sent a social worker) came that they were coming and she said she was going to lock herself in her bedroom...which is actually funny because how could she get to the door??? She's paralyzed from the waist down (not funny, but you know what I mean). So, she called me a murderer, everything you can think of and told me that if I put her in a hospice center (which is NOT what I want to do), that I could forget where I put her and forget she is my mother. So, hospice came and she listened (once again, because my husband calmed her down) but told her that she feels like she would be 'cutting her thin thread of hope' away if she accepted hospice. We tried everything, but the answer was still no. The hospice person was great and talked about how you can revoke hospice benefits, etc....but nothing worked. She even started raging last night that she wanted another dr. even though we can't even get her down her apartment stairs!!! I spoke to her Dr. today and he says that he's fairly positive that the cancer is progressing faster than we thought and is pressing on her spine. He said this speeds things up sooner than the 2 months he originally told me. She doesn't know that though and can't handle it. I asked her today, "what do I do when you have so much pain you can't handle it? You won't let me get you stronger medications, etc?" She said that she didn't want any more pain medications and didn't care if she died painfully. As of today though, she's started saying 'just give me the paperwork and I'll sign it because everyone is forcing me into it." I had a thought...do you think that she's too weak to say 'I'll accept hospice,' herself and will do it as long as she can make us the bad guys?? I don't want to do it and then she gets mad and cancels it when they come here. I feel like this situation is uncontrollable. Her Dr. talked to me today while she was sleeping and told me that if I wanted to call 911, he would send in a pysch. consult and have her declared mentally unfit at the hospital. I don't want to do that though. What do you guys think? Thanks again.
  14. The hospice person said I needed to tell her that she was coming tomorrow. I don't think they understand how mean she gets and how much she flips out. I'm tired of being flipped off, I'm tired of being told I'm not lifting her right. I'm practically living over here and she doesn't see that I'm doing what's best for her. I'm freaking out that I have to tell her tonight, and I realize it's because I'm afraid of my own mother. What a realization that is! The thing is, is that my mother had violent tendencies before this, but I never saw them. I've heard stories from my dad (her ex-husband) and others, but I've never seen it until now. I hate that I see this side of her....it goes beyond cancer...it's like it's brought out her hateful side that she really had before. I'm practically shaking with having to tell her. Please send me your prayers and thoughts tonight.
  15. We did tell hospice (over the phone) about the situation and asked to meet with them. They said that wasn't necessary (don't know how I feel about that) and that they have been through this extreme denial before and will try to work through it with her when they come. Gosh, I hope I get someone who can reason with her. When everyone leaves though, all hell (pardon my expression) will break loose. I know it, and I'll be the bad person and she'll tell me she hates me again. She told me to jump off the balcony of her apartment before...it's crazy. The funny thing is, I would NEVER let someone get away with treating me the way she has. But she's my mother...what more can you say?
  16. I should probably also say that she doesn't know they are coming tomorrow, because she gets so violent about it when we talk. There is no option but to have the hospice coordinator walk in with my husband and her boyfriend while I'm here too.
  17. Well, I've told everyone the whole sorted story...so I won't go into it again. Since I last posted, she's gone completely numb from her waist down and lifting her has become unbelievably hard by myself. We can't make it to the bathroom in time, most of the time. Since it's just myself and her boyfriend, we take turns on who is here. I'm so scared, and she still refuses hospice. She won't even talk to me about it. So, my husband tried to talk to her about it, and she got frustrated and yelled, "Just give me till Sunday to make a decision." The thing is, is that she won't make it. So, my husband said, "Well, we need to get someone in here to talk to you from hospice because she (being me) can't handle all this, and she feels badly because she knows she isn't giving you the best medical care she should be. We want you to be as comfortable as you possibly can, and being in an uncomfortable bed or couch isn't the best we can do." I told her that I wasn't trying to get out of anything, that I would still be here as much as I have been, and that I simply need someone to teach me what I don't know. She told us to get out. We couldn't even get into other stuff with her because she won't let us talk. She told me she hates me and that I'm trying to kill her. Well, hospice is coming here tomorrow at noon and I'm so afraid she's going to flip out. She told me this morning that she's not going to give up, and I told her I didn't want her to, but she said that that's what I'm doing. I'm so overwhelmed and I feel like I can't breathe. What if she says no when they are here? What am I going to do? I have Power of Attorney, but that doesn't apply if she's still awake and can make decisions. This is horrible, she can't even lift herself up to a sitting position without me and I know she's in so much pain. She won't even let me get her better pain meds, because she starts screaming that she wants to be awake. I feel like I can't keep this up and I don't know what to do.
  18. Mom has signed a Power of Attorney for her health care, but refused to fill out the part that really mattered (living will, dnr, etc). It's like she's in her own world. I try to get firm with her and she just wants to do battle, it's like it baits her into argueing and she won't stop.
  19. I really don't know what to do at this point. My mom has been told for three weeks now that there is nothing more they can do for her and that hospice is the next step. All she thinks is that everyone wants her to lay down and die. In private, the Dr. told me she has less than 2 months left. She's too emotionally fragile to hear that, trust me. She can no longer walk on her own and even with me helping her and using a walker, she continues to fall in her apartment and can't make it to the bathroom, etc. I clean her up, etc. She blames it on the chemo and says 'can't they give me anything else?' There is nothing else, except some really strong ones that would kill her, she is so weak. Her boyfriend and I are her only caregivers, and I don't know what to do. She keeps saying that she's not ready to die and she's in such complete denial she's told me she will hate me the rest of her life if I bring in hospice. She says she won't let anyone in her house. But yet, I've known all my life that my mother always wanted to die at her home if something like this ever happened. She needs a hospital bed, she needs a portable toilet, etc. The Doctors can't talk to her either, she just gets mad. I just want to take care of my mother, with some help. I'm practically living here now (every day I work from here to help her). I don't want to put her anywhere, and she can't see that. She's being so mean, and I've tried every way I know how to exlain this to her. You name it, I've done it. How do I just walk in with hospice, knowing that she will tell me she hates me. And she will say it, she's always been extremely unpredicatable mentally. We arent't keeping anything from her, the only thing she doesn't know is the less than 2 months thing. She is having extreme pain too and refuses the morphine pills until it's really bad and then they don't work as well. Please give me advise. I can't do this on my own anymore. I had to watch her crawl on the floor yesterday because she wouldn't let me up. I feel like I'm losing my mind. I called a cancer support group in our community yesterday and they really didn't offer much of an opinion. I feel so lost.
  20. I haven't been here for a long time...got caught up in my mom's treatment, etc... Some of you might remember me on here around the time that my mom was diagnosed. Well, since that time...my husband's dear mother was diagnosed with bronchioloalveolar carcinoma with brain metas. She lived only 4 months and passed away in May. So it's been a little difficult and now my mother's SCLC has spread to her brain. SO.....I came to visit on here and can't seem to use the 'Ask the Expert' section. Is it gone?
  21. I cannot offer any helpful words as I'm slowly figuring my way around in this horrible disease with my mother, but my prayers are with you and your husband.
  22. Everyone has been so helpful...I haven't been posting a lot of response to other posts, because I'm still a newbie to all this, but thank you. My mom is starting to lose her hair, and she's purchased a wig. But, she asked me what she should do about her eyebrows because she says the hairs are starting to fall out (she's very concerned about her appearance). I saw a site that specialized in stuff for cancer patients and they actually had glue-on eyebrows or semi-permanent tatoo eyebrows. My mom asked me to ask some women on here what they did? Did you just pencil, or purchase some product like what I mentioned above?
  23. Wow, nothing really prepares you for this...My mom is saying the most hurtful things and saying she just wants everyone to leave her alone. She's bringing up stuff from years ago that we said to each other and just being so mean. How do you deal? I thought I was a really strong person, but when someone you love is just ripping into you and then seems pleased when you are bawling your head off...it's hard to hold it together. Anyway, does anyone have any helpful hints for how to deal or cope without feeling like a piece of doo doo (sorry to say it that way, but that's what it's like). I wish there was a guideline that would say, 'this stage lasts X amount of days.' Geezz...!!
  24. Many of you read my first post about my mother and her past depression, etc. and lack of wanting to know details of her SCLC. Many of you said that she would start wanting to know more as she moves forward and not to push...and I agreed. I'm sitting her writing this crying (at work, so I need to pull it together) because I don't know what to do at this point. I talked to her onc who said that he felt she was fragile at this point (a week ago), and that he would share more information with her when he felt she could handle it. He told me that if she asked me questions about prognosis, survival rate, etc. to tell her to make a list of her questions to ask him at her weekly appointments because he had the best and most accurate information. So...she's started asking questions last week and I told her that those questions were good, but some of the data I had might be outdated and the Dr. said to ask him those questions. My mom said, okay...I'll make a list of those questions for our Monday appointment with him. When our appointment came, she didn't ask any of those heavy questions she said she was going to...nor did she write any of them down. That night, she lashed out at me telling me she felt like no one was telling her the details and I asked why didn't she ask the doctor if she wanted to know. She wouldn't answer and just kept yelling at me saying she didn't know anything...that she didn't know if she had lymph node cancer (as she called it) or lung cancer, etc....even though the doctors have told her several times that it's small cell lung cancer. It's like she wants to know...but she doesn't, so she's treating me like crap and saying really mean things to me and blaming me for stuff. She said several times to me yesterday that she just wanted to die and that I was treating her like she didn't have a brain. Keep in mind that the only symptoms she's had so are vomiting and nausea from the chemo and I don't think she's strong enough mentally to handle more. She told her friend this morning that no one is asking her what she wants, they are all just assuming that she wants to fight it. She said she wants to just go home and die. She had her port put in today and she won't speak to me since then. I tried to call her and her boyfriend told her I was on the phone and she just screamed, "not now." I really don't know what to do. I've mentioned going to the cancer care center close-by to see a social worker, etc. and someone to talk to, but she doesn't want to do that either. Please help me make some sense of this, because I can't sit here at work crying and thinking about this non-stop.
  25. Even though I've just joined this board, I wanted to say how sorry I am to hear about Rachel. From what I've read, she seems like she was such a fun loving individual. May her spirit keep you company during this tough time.
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