SC7454 Posted October 18, 2006 Share Posted October 18, 2006 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. Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted October 18, 2006 Share Posted October 18, 2006 I hate that you have to be in this situation! My heart is breaking just hearing what you have been going thru. All I can tell you is that when my dad was in his last weeks, the one thing that we wanted to make sure of was that he wasn't in any pain... Of course this is my opinion and everyone may think differently, you know your mom better than anyone else, she really doesn't want to be in pain. Her dr. really wants to help you out.....please, I've seen my dad in awful awful pain and I promised him that I would make sure he wouldn't be in pain, it took a little bit, some not so good results, but he wasn't in that agnozing pain. Work w/ her dr. if it was me, I'd get him to sign the papers.....I know it is difficult...you want to respect your mom, but you don't want to see her suffer........ please know we're here for you.. Grace Quote Link to comment Share on other sites More sharing options...
Treebywater Posted October 18, 2006 Share Posted October 18, 2006 I just wish I could give you a big hug... I just ache for the position you are in. Your theory about her wanting to make you guys the bad guys... could very well be. I certainly don't know... but it sounds plausible, especially if she is saying, "Just let me sign the papers." I'm trying to remember has her doctor talked directly to HER about all this and about the need for hospice? I mean... did he say the word 'hospice' to her? I just hate the spot you're in... I can't imagine how crushing it must have been to have someone suggest you get her declared mentally unfit... It sounds like you are running out of options... and that one just must have hurt so much to hear. I'm so sorry you are in this situation. I care. I wish there was more I could offer... But I do offer you my shoulder to cry on and lots of care and support for you and prayers for your Mom and your family. Quote Link to comment Share on other sites More sharing options...
SC7454 Posted October 18, 2006 Author Share Posted October 18, 2006 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. Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 18, 2006 Share Posted October 18, 2006 As everyone has said..so sorry you have to go through this heart breaking situation. If it were me, I would take her up on her offer *to just sign the hospice papers* and if she changes her mind, then she just does! At least this way, there IS a chance that once Hospice gets involved her comfort level will improve and her quality of life will as well. Her doc sounds very supportive and at least he gave you another option to consider. Prayers and hugs.. Libby Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted October 19, 2006 Share Posted October 19, 2006 I cannot add to what has been said already. I just wanted to send you prayers of strength and let you know you are in my thoughts. I am so sorry you are in this position. Hugs Chris Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted October 19, 2006 Share Posted October 19, 2006 It pains me deeply to know you are in this situation. We've talked a lot on this board about how many times, for patient and family alike, the mere mention of the word "hospice" sends chills down the spine. It's a hard thing to accept, but, having had hospice for my stepdad who died of LC in 1999, I can say I am glad they were there for myself AND my mom. When she was diagnosed in 2004, however, and passed away this past Feb, my heart was in a different place, and I don't know that I could have EVER accepted hospice for her... I liked Katie's idea. Of course who knows if your mom would buy that explanation at this point or not. Are you in the Chicago area? I saw in your sig line that your mom went to Loyola. Of course there are many Loyolas in the US. My mom went to Cancer Treatment Centers of America here in IL and they had a fabulous pain management clinic. She lived pretty much pain-free--but never EVER groggy--most of the time. Your mom should not have to live with her pain! It is so sad that she will not accept any help. It certainly sounds like she has a lot of things going on aside from the cancer, and you are bearing the brunt of it. These times should be ones for bonding, closeness and togetherness. I am so very sorry that it is the way it is for you, because it causes a lot of pain and regret all the way around. It has got to be such a helpless feeling. I came here when my mom was first diagnosed, too, and then dropped off for a long time. I only really started posting again when she died, but the support I have gotten from these boards has been immense, and I don't know what I'd do many days without the people here. Know that no matter what, you can always count on us. We all care very much and will try to help you through it in any way we can. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 19, 2006 Share Posted October 19, 2006 I still think it may take some more time for your mom to realize that this is reality and when the pain becomes unbearable for her, she will take more medicine. As far as what she is saying to you, how do you respond to her? Not reply? I remember when mom was combatitive we had to remain supportive and not say a darn word, just be supportive. You have to distance yourself from what she is saying and know know know in your heart that you are trying to make this easier for her, but she is not ready. Keep trying and plugging along with what you're doing. Please keep us updated-I am very worried about you and want to help support you through all of this trauma. Quote Link to comment Share on other sites More sharing options...
TamHol Posted October 19, 2006 Share Posted October 19, 2006 Personally, warning it may not be to everyone's liking, I think the truth needs to be told. Not so much that she is overloaded, just the basics "The cancer is getting worse and I am not equipped to take care of you. Emotionally you are my Mother in pain and I can't stop any of this from happening to you. Physically and education I can't give you the proper care you deserve and require. I don't want to drop you if helping you from one place to the other, I don't know if when you become worse if I'll know your in pain and want med's .... I've never done this before. What would you do if you were me?" This is the truth is it not? I know your Mom is bull headed, so write it in a letter and leave for groceries. She can only fight with herself then, and it's something that she can keep so that if she ever forgets your commitment to her, she can be reminded. Maybe start with homecare if you can afford it. Let her see your pain, tears and urges to make this all better! She doesn't sound like she wants to leave you anymore than you want to let her go. Maybe if you appeal to her on a more personal level or agree to a homecare system that is the middle ground. Best of luck to you, I hope something can be worked out cause this is a terrible time to fight and argue. Tammy Quote Link to comment Share on other sites More sharing options...
Nick C Posted October 19, 2006 Share Posted October 19, 2006 I have nothing to add, just know I am praying your mom and for you. Quote Link to comment Share on other sites More sharing options...
Mskim Posted October 19, 2006 Share Posted October 19, 2006 Same, I have nothing but prayers for you and remember... it is the cancer, not your mom. Kim Quote Link to comment Share on other sites More sharing options...
SC7454 Posted October 19, 2006 Author Share Posted October 19, 2006 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. Quote Link to comment Share on other sites More sharing options...
TamHol Posted October 19, 2006 Share Posted October 19, 2006 I relate and sympasize with you ...... It's hard to deal with this without the past coming in to play. It can't be seperated. I was the one that said "tell her the truth" I don't know if all the messages are getting blurred. But mine was about the truth of what you can deal with and how it's effecting you. It seems you had and took that moment when she fell out of the wheelchair. Apparently the "I'm not able to do this" message was recieved but her pride won't let her appreciate it ("I hope" "I hope" "I hope"). At some point in time she must have decided that she couldn't count on anyone and needs to prove something to all. Right or wrong given the past you've discribed ... that maybe what this fight is about. If so, that's her fight, not yours! Know what ....... sometimes the best efforts are never acknowledged, and maybe that is what you'll have to accept. Cancer talking or not you still have to get threw your day! Maybe the single thought of knowing you did your best with what you had and against the odds as given, will have to give you your peace and comfort. We all have to be aware of our own well being. If that means being the bad guy and putting her into the hospice she doesn't want .... it will have to be. I'm glad you are allowing yourself to take yourself into consideration. Not only for your physical and mental state ....... but for the remaining relationship you wish to have when she goes. I burried my Mother in 1992 and haven't ever asked for her back ....... She was a mean visious woman who I refused to leave behind. I only stayed with her out of what I remembered her to be along time ago....and she tested that choice! Don't feel badly for getting mad at her ... all that ridicule is hard for anyone person to take. You can't help feeling offended, the words hurt and they sting. Cancer in the brain can make this happen, or old habits die hard!!!! If there is ANY chance that your anger will make her better understand the gavity of the situation ... I say do it, for yourself and that stress release as well. Regardless you ARE doing what you can to make her comfortable and take care of her. There is no right or wrong to this illness .... Tammy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 19, 2006 Share Posted October 19, 2006 Wow, I remember the falls and even the "almost dropping" during transfers with my mom. Once it got to that point (and it sounds like you are at that point), it became that we had to be very firm that no more transfers when only one person was there. In fact, it took 3 of us to shower her. So, we just set the limit that if 3 people weren't there for a shower, we had to wait. Mom hated giving up this dignity and independence, and I hated it for her. She did say some pretty nasty stuff to my SF (some very deservd as he was so impatient) and me sometimes too, but again, she was dying, not us. I prayed for you a bunch last night, don't know your name but I just prayed for "the daughter who is trying so hard to be a good daughter". So, I know that your mom is numb waistdown. Is she still getting up each time to go to the bathroom? Bedpan? Bedside commode? I am curious bc I imagine that once hospice signs on, it will be bedpan. The hospice aide will probably come maybe 3 times a week to help with a bedbath, but you and your mom's BF will still be needed to do all the same stuff. It is so hard. Just keep hoping that your mom can start to deal with her anger and that she shows you an ounce of appreciation-you deserve it! You are doing your best : ) Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 19, 2006 Share Posted October 19, 2006 As Lori said *you are doing your best* Continued prayers for you all Libby Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted October 19, 2006 Share Posted October 19, 2006 ... I just read your update, and it jolted my mind about something my dad said when he was dying last year. He felt like he "deserved" all the pain he was getting because he had done some very bad things to the family......we told him, that wasn't the case, and we forgave him long ago...but perhaps this is your mothers' way of thinking she deserves it.... Grace Quote Link to comment Share on other sites More sharing options...
Treebywater Posted October 19, 2006 Share Posted October 19, 2006 Just more ((((hugs)))) to you. Reading your post, I'm going to make a guess/assumption here, and if I'm all wet, you can just ignore me... but it sounds like you are scared right now because you are angry at your Mom and you also know that time is very short. I think that very likely, anger won't be the only emotion you feel toward your Mom in these days. I imagine you will still feel a LOT Of love. Because she IS your Mom, and nothing, nothing, nothing changes that. WE daughters don't always have great relationships with our Mom's and those of us who do would still probably tell you that they can or could push our buttons faster than anyone. Mother-daughter relationships are messy even in times like this--maybe even especially. So allow yourself to be human... and trust yourself. You DO love her. That's why you are doing your darnedest to get her the best care she can have so that she can be the most comfortable at this time. hang in there. We're all here supporting you. Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted October 20, 2006 Share Posted October 20, 2006 You are doing the right thing by getting hospice involved. Sounds like the relationship with your mom is already strained so I think it is worth straining it a bit more to get some help for yourself and for her. Some people just need something to complain about so why not let it be the hospice help instead of you. I understand the situation you are in and commend you for being such a great caregiver. Hang in there! Karen Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted October 20, 2006 Share Posted October 20, 2006 While some of the facts are very different, when Dad finally agreed to hospice it too was at the bitter end and he didn't say "yes it is time" but rather gave into the situation because he was too weak to agrue any longer. I returned to PHX after my gut feelings that "things were just not right" in the conversations that we had been having over the phone during my three days back in OH finally won out ... and I hopped a plane from OH to PHX unannouced until my arrival in PHX. I arrived to find my Dad an utter mess! He has like looking at a dead person...literally. I will spare you any further details of his appearance - but it was astonighing and I had to forced myself to not burst into tears at the mere sight of him! I honestly believe had we not done something that day -- he wouldn't have seen the next day. I told him he was NOT going to do this to himself in my presence. I would NOT stand by and watch him suffer and do nothing to easy his pain or the vomitting that was destroying him ... no matter what that might mean (and I meant every word of it!). It would have broke my heart into a million piece to have had to declare him and SM incompetent and inforce my POA rights..but there was no way in hell I was going to allow his last days to be like that and seeing him in this condition and seeing his immense suffering ...was completely shattering my heart anyway. I told him his only options were to go by ambulance to the hospital or let me figure out what could be done with hospice. He was so weak and exhausted that his only reply was to admit how weak he was and that he did not have the engery to make any decisions. He said SM and I should discuss it and he would do whatever we felt best. In the end he was admitted to a hospice in patient unit and while I know he did not want to be there and did not really believe that he "needed" to be there yet, he did comment several times during his stay that he was glad he was there and that he was comfortable in being there. He always mentioned going home, even up to the day before he died, but I know that he had no regrets about hospice once he was actually there and had a chance to see that his worst fears (everyone giving up and loosing all hope) were not coming true. I know others have said it...but your Mom is bound to be scared senseless and I would guess that much of her anger and venom is based on fear and the many, many unknowns that she is facing. Dad never said so but I suspect that he thought that entering hospice would mean that we (SM&I) who had provided MUCH of his care would somehow or for some reason disappear from the picture and that he would be left alone. In fact he eventually on his fifth night in the hospice house say "I don't want to be alone, do you think someone could stay with me at night too"...so I know that he was fearful of being alone and dying alone. Remember, actions speak louder than words... as soon as your Mom sees that you are not going to leave her and things will be "ok" with hospice, I'd bet that she too will find the sense of peace that it to my Dad eventually was able to find with hospice. My heart breaks for you... I know how very, very hard that period of time (about a month or month and a half for my Dad)between the doctors saying there was nothing more they could do and Dad finally going into hospice was for me, for my family, and most importantly for my Dad. I pray that your Mom will find that "just signing the papers" will be a good thing - and that she as well as yourself and family, will like my Dad, myself and my family - be able to find comfort and peace in hospice despite all her fears and inital objections. Please know that I am thinking of you (and your Mom)and praying for comfort and peace for you both!! I'm so sorry you are faced with all of this. Cindy Quote Link to comment Share on other sites More sharing options...
Mskim Posted October 20, 2006 Share Posted October 20, 2006 ((((Hugs and prayers))) My mom and I had some rough times too, after she was sick she could be very vicous, between chemo and decadron. I pray that your mom comes to terms with what is happening and that you can have some soft moments to look back on. Even though you have anger and frustration, you are doing your best, you are loving her in your actions even though it may just feel ugly right now. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 20, 2006 Share Posted October 20, 2006 Stephanie, I know you are probably so very busy today, but I hav thought of you alot today and I am praying that the nurse and your mom were able to communicate well. Hope you are hanging in there girl. We're all here for you!!! Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 20, 2006 Share Posted October 20, 2006 Been wondering all day how you are doing and praying that things have calmed down a bit. Please know we are here for you. Hugs, Libby Quote Link to comment Share on other sites More sharing options...
Welthy Posted October 21, 2006 Share Posted October 21, 2006 You are a good daughter who has obviously been through the wringer. I think of a woman in our support group who told us that none of her children would take her into their homes. She had SCLC, was not able to have anymore treatment, and was financially strapped. We couldn't believe that children would turn away from a parent that way. YOU haven't done that, despite whatever you are feeling. Surely God has a special place for you in heaven. Bless you for what you are going through. Welthy Quote Link to comment Share on other sites More sharing options...
Maryanne Posted October 21, 2006 Share Posted October 21, 2006 I am just reading all the posts on here. Just want you to know that I am thinking of you and really hoping that hospice will work out for her. I wish she would realize that you and her friend just cannot do this alone and that there is help out there. I am praying that she changes her mind and accepts the help that is there for her. I understand your frustration as we are only human. I can't help but worry about your mental state. Just know that you ARE doing eveything you can to make this easier for her. I hope you next post tells us that she accepted hospice and is coping fine and her pain is being managed. Maryanne Quote Link to comment Share on other sites More sharing options...
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