SC7454 Posted October 24, 2006 Share Posted October 24, 2006 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... Quote Link to comment Share on other sites More sharing options...
Treebywater Posted October 24, 2006 Share Posted October 24, 2006 I know it's far from easy now... but you sound a bit more peaceful. I'm glad some things at least have worked out a little. The wondering is excrutiating... I know that is hard, and I know it must be terribly hard to see your mother so angry at the world... Of course she has every right to be. My prayers won't stop for you. We're here. We care. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted October 24, 2006 Share Posted October 24, 2006 I am very glad to read that you are at least getting some relief and help. As difficult as it is to involve Hospice, it was time. I continue to keep you and your mom in my prayers. Chris Quote Link to comment Share on other sites More sharing options...
Nick C Posted October 24, 2006 Share Posted October 24, 2006 I'm happy to hear you had some good talks. I'm happy you'll get help, too. I know what it is like to want you mother happy and not want her to go through this. But when we were children, our mothers wanted to protect us from hurt, but it happened. It's the same here. We can't control what life delivers and it is frustrating as a child to witness. I pray for you and your mom Peace and Comfort. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 24, 2006 Share Posted October 24, 2006 Stephanie, So glad you guys had that talk-it means everything and don't forget it. Peggy once told me to write down those important things my mom said so that I could always reflect back to them. (Of course, I have this place as my journal cause I constantly spilled my guts : ) If your mom still has control over her bladder, I wonder why a bedpan is not being used rather than having mom wet in her bed. Of course, her friend would have to put her on it and take her off and maybe even help her clean up, so I guess that's why that is not being offered. My mom only had the catheter once she no longer had control over going to the bathroom. I am so glad to read this post from you today. You are doing a marvelous job. Hugs to you from me!!! Quote Link to comment Share on other sites More sharing options...
SC7454 Posted October 24, 2006 Author Share Posted October 24, 2006 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 Quote Link to comment Share on other sites More sharing options...
Ry Posted October 24, 2006 Share Posted October 24, 2006 I am not sure this is something that your mom would be interested in, but there are mattresses that move air through them and shift the person's weight while they are in bed. They use them for wheelchair users to prevent bedsores. You could get one through the hospice or home care I would think. Quote Link to comment Share on other sites More sharing options...
SC7454 Posted October 24, 2006 Author Share Posted October 24, 2006 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. Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted October 24, 2006 Share Posted October 24, 2006 I'm glad hospice has been allowed in and that your mom has told you that she is mad at the world and not at you. Remember those words as I am sure she will still be taking her anger out on you. Also glad the xanax has offered some peace of mind. Hang in there, you are doing a wonderful job. I'll keep you in my prayers. Karen Quote Link to comment Share on other sites More sharing options...
Linda661 Posted October 24, 2006 Share Posted October 24, 2006 I'm glad things are going in a better direction for you now -- I've caught up with your posts just recently (I just haven't been in as much as I used to), and, unfortunately, what you have been going through lately is really, really close to home for me as well (as mamasbabygirl mentioned to you in another thread of yours). Please do feel free to PM me anytime you need to. This part can get really, really rough for you from what I've read in your threads no matter what is being said now -- hang in there and just know you are not alone: you will be able to get through this and still be able to provide all the love, advocacy, and support to your mom.....no matter what. Many hugs, Linda Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 24, 2006 Share Posted October 24, 2006 Sounds like you are getting help and relief, and that's good. Don Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 24, 2006 Share Posted October 24, 2006 I am so glad that you posted as you have been on my mind constantly...it sounds as if things have evened out just a little and thank goodness. My dad reached a point when he couldn't get out of bed either and once in a while, he would like me to massage his feet, hands, back and legs..he said it felt good (only sometimes) and it helped with his lying in one position because at least I would gently raise his legs as I massaged them. I used a non scented lotion. Not sure if your mom would stand for that but it is a suggestion you might try. Try to protect her heels too because that is one of the first places (besides her bottom) that can break down. (elbows too) Praying for you and your family and take care of you too, ok! How often does hospice come? I certainly understand your mom's issue with dignity and not wanting her significant other to change her...perhaps you can ask the nurse if they can come more often? Or perhaps put in a request for an aid..just for stuff like this. Gentle hugs and blessings Libby Quote Link to comment Share on other sites More sharing options...
kamataca Posted October 25, 2006 Share Posted October 25, 2006 Sending lots of prayers out to you as well. I wish there were magic words to tell you, but for what it's worth I think you are doing a fantastic job. Kelly Quote Link to comment Share on other sites More sharing options...
Mskim Posted October 25, 2006 Share Posted October 25, 2006 You are doing a wonderful thing by sticking by your mom even though it is painful and thankless at times. In the end, you will never look back and say I wish I would have tried harder. I am so glad you had a talk, and I am still praying for some sweet moments for you. Hugs and prayers for peace, for both you and your mom. Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted October 25, 2006 Share Posted October 25, 2006 We struggled with the catheter issue, too. My mom just got to be too weak to get to the bathroom, even with help, and I KNOW she never would have gone in a Depends. She ended upbeing so obsessed with the catheter and insistent on getting up to go to the bathroom that I wish we had just removed it. So much of our last conversations were about toileting! However, maybe you can talk to her about the numbness and the fact that she probably won't feel it anyway. If she at least gives it a try, it may work to her advantage, and if not, it can easily be removed. If she still declines the cath, ask hospice to get you some barrier cream to put on her tushie to protect the skin from the wetness. I can't remember the name of the stuff we used for my dad's g-tube skin, but it didn't rub in and was really good stuff. A wound care clinic should be able to get it for you if Hospice cannot. Boy, I feel for you. This part is so difficult and never quite what we expect. Take care of yourself, too. Glad the Xanax is doing its job. ~Karen Quote Link to comment Share on other sites More sharing options...
kreed70 Posted October 25, 2006 Share Posted October 25, 2006 The talk must've lifted a huge weight off of your shoulders. You are doing great in taking care of your mom. I can't imagine how hard all of this is. Sadly, I may find out. We are here. Kelly Quote Link to comment Share on other sites More sharing options...
Maryanne Posted October 26, 2006 Share Posted October 26, 2006 Hi Stephanie, I am glad that you had a talk and things are in a better perspective. What you are going through right now is so hard on you. My heart goes out to you, but it will soon be over and you will get the relief you all deserve. I wish I could do something to help you through this , but all I can do is be here when you post and need to vent. Thinking of you and sending you strength to get through this. You are doing great and you should never have any guilt as you are a wonderful daughter. Maryanne Quote Link to comment Share on other sites More sharing options...
TamHol Posted October 26, 2006 Share Posted October 26, 2006 Hi Stephanie, Although it is still all spiraling downhill it's great to hear that she is giving you the help you need to care for her. Emotionally and physically, it's seems that she is just as much in a windmill of emotions herself. Given her personality I'm sure it takes alot for her, and I'm glad she took the time to explain her anger to you .... you needed that. The words won't sting as much now that you know it's not "you", it's the situation. You get to keep those memories now as they were always intended..... Good Luck in the coming days. Tammy Quote Link to comment Share on other sites More sharing options...
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