onlychild* Posted July 28, 2007 Share Posted July 28, 2007 Am so scared. Mom is in a very bad way... is so horrid - only 2 weeks ago she had gotten some energy back and was even walking a few steps and scooted herself around in a wheelchair a few times to my surprise! She has been going downhill since the choking incident the Sunday before last - that was scary. Hospice didn't help then when I called and today when I called hospice again they wouldn't come out either. She is suffering. Mom and I are all alone. Why can't I get help from hospice, why won't they come out the only 2 times I called for help? I really thought she was going to die a bad death yesterday. She was so disoriented, agitated, wasn't making sense, couldn't form words and couldn't stand up etc...I have to lift her onto the commode and change her diapers, administer her morphine and other meds, etc... I am up with her now it's about 4 am. I keep putting cold cloths on her to keep her cool, adjusting the fans to circulate air and telling her it will be ok. She wants it to be all ok. I'm so scared. This is an absolute nightmare. I keep thinking it really is a dream, especially when I stare out the window into night, everything is so surreal. Even I struggle to breath at night. I was hoping mom and I could come to terms with her death, that it would be a peaceful transition - but it is nothing such. She is breathing like a goldfish out of water, gulping for air now. She looks at me with glassy frightened eyes, sometimes seeing me and gaining hope and other times looking straight through me, full of fear. All I can do is tell her to breath slowly, that she is doing an amazing job, that I love her - she gives me the "thumbs Up" as if my words of reassurance really do help her. Thanks for letting me get this out, I really don't know what to do. Is it normal to be so frightened? Thank you SO much for your support - I can't even express how much it means. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 28, 2007 Share Posted July 28, 2007 AM not sure how to respond here but will try. If you are not afraid something would not be right. It is ok to be scared. this is something that will happen no matter what. I am scared reading this post. I can imagine what is going on. Everything happens for a reason that we do not always know, what that reason is. only God knows and He will reveal his plan to us in his own way. The best thing I can offer is to let mom know how much you love her right now. if she is in pain I would recommend possibly the hospital aASAP for pain control. I can not offer advice about Hospice because I have never used hospice before. I do know that this is not good what is going on. you amy want to call ambulkance if breathing pproblems are happening. PRAYERS AND HUGS AND I HOPE SOMETHING HELPS HERE THIS MORNING> Quote Link to comment Share on other sites More sharing options...
tiredmom959 Posted July 28, 2007 Share Posted July 28, 2007 I'm sorry that I don't have any words of wisdom, but just wanted to tell you that I'm praying for you. Of course you're afraid, who wouldn't be. But you're doing the best that you can in a terrible situation, and your mom knows that. Quote Link to comment Share on other sites More sharing options...
Kirsty Posted July 28, 2007 Share Posted July 28, 2007 onlychild - you are doing the best you can in an awful situation. If the Hospice can't or won't help you, can you engage another provider? Snoopyfn had the same problem: http://www.lchelp.org/l_community/viewtopic.php?t=31788 Quote Link to comment Share on other sites More sharing options...
laban Posted July 28, 2007 Share Posted July 28, 2007 I am so sad this morning reading your post about Mom's night. It must be frightful for her and for you. I can't understand why Hospice or at least home care nurses aren't addressing her wounds. This is inexcusable. I hope and pray you will be able to find some answers today so that your Mom can leave this world with the dignity and peace she deserves. Quote Link to comment Share on other sites More sharing options...
Ry Posted July 28, 2007 Share Posted July 28, 2007 I am so sorry for what your mom is going through. Please get a supervisor or someone in charge at the hospice on the phone and tell them you need someone there. If you don't get any help then fire that hospice and get a new one in (hopefully you have a choice in your area). It is not supposed to be like this. Rochelle Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 28, 2007 Share Posted July 28, 2007 I agree with Ry, something is not right with that hospice. Check around for other ones. Also, you may want to put her into a hospice facility where where would get around the clock treatment. I think they would let you stay with her. This is just a suggestion as she just seems so unfomfortable and it should not be that way. I am not even sure if your area has a hopice facility but you can look into it. They are suppose to come visit daily if it is getting close to the point where she is critical. I just understand what is up with that hopice. Iam also so sorry for all you are going through, especially being alone with this. You are doing a tremendous job with her meds and getting her your love and encouragement. Thank G-d you are there for her. Take comfort in knowing you are doing everything right. You are a wonderful daughter, her guardian angel. Please try and get this hospice thing taken care of. Maybe someone on the board who lives in your area can recommend some hospice advice. We are here for you 24/7. You are never alone as we feel your pain and we care. Maryanne Quote Link to comment Share on other sites More sharing options...
carolhg Posted July 28, 2007 Share Posted July 28, 2007 I am so very sorry to hear all that you and your mother are going through. My prayers of strength and of comfort for the both of you. Carol Quote Link to comment Share on other sites More sharing options...
Treebywater Posted July 28, 2007 Share Posted July 28, 2007 First of all, I'm so sorry that this is happening. Just so sorry. Second of all.... I know that it's probably exhausting even to think about it, but it sounds like once again a hospice is failing to provide adequate services. If you are up to it please think about calling and letting them know that they are FAILING you, and if there is another provider in the area check into them. You both deserve more support than this. Regardless, WE are here to support you. And we do. Quote Link to comment Share on other sites More sharing options...
Nova Posted July 28, 2007 Share Posted July 28, 2007 I'm so sorry. I can't even imagine what you're going thru. Please do call that Hospice agency and ask to speak to a Supervisor. You shouldn't be having to deal with this all alone-- they are suppose to be helping you every way they can..... I'm thinking of you. Nova Quote Link to comment Share on other sites More sharing options...
fillise Posted July 28, 2007 Share Posted July 28, 2007 I'm sorry your mom is having to endure such discomfort. I found a like to the Minnesota hospice Bill of Rights which may help you in deling with the hospice supervisor, although I second the opinion about getting another hospice organization in there ASAP! http://www.health.state.mn.us/divs/fpc/ ... ng_reg.pdf Susan Quote Link to comment Share on other sites More sharing options...
janehill Posted July 29, 2007 Share Posted July 29, 2007 I am also an only child. It is ridiculously unfair to take this all on by ourselves, but that's the deal. So, please let me suggest (as others have) that you immediately engage a different hospice. I had two very bad experiences with mom's former hospice not treating an awful throat infection (raw burning throat for 2 weeks) and then a UTI (and those are brutal) that ultimately landed her in the hospital. How DARE THEY decide to ignore an infection that was causing her pain! I fired them! You CAN call 911, sign her out of hospice because they are clearly NOT MANAGING her pain. Let the hospital stabilize her and while she's there, find another hospice provider that may work better for you (talk with the social worker at the hospital). Above all, I am thinking about you and honestly am truly sending you the best wishes - from one daughter to another. Quote Link to comment Share on other sites More sharing options...
Nick C Posted July 29, 2007 Share Posted July 29, 2007 First we are here with you supporting you. And I second the calling of 9-1-1 if you feel this is a time when your mom needs help and hospice is not there for her. Oh this just pains me. I am so sorry. Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 29, 2007 Share Posted July 29, 2007 "janehill" You CAN call 911, sign her out of hospice because they are clearly NOT MANAGING her pain. Let the hospital stabilize her and while she's there, find another hospice provider that may work better for you (talk with the social worker at the hospital). Excellent advice! The hospital social workers my wife and I have dealt with concerning my father and both of her parents have been supportive, caring, and very helpful making many kinds of arrangements. That's their expertise -- let them help you -- you shouldn't have to bear this alone. Much Aloha, Ned Quote Link to comment Share on other sites More sharing options...
kaneohegirl Posted July 29, 2007 Share Posted July 29, 2007 if in pain use the medical team you need to use! go to ER get the pain managed then find a new hospice Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted July 30, 2007 Share Posted July 30, 2007 I am just so sorry this is happening. Quote Link to comment Share on other sites More sharing options...
MomsGirl Posted July 30, 2007 Share Posted July 30, 2007 This hurts me so badly, I just cried reading your post. I am SO sorry that you are going through this, and going through it alone. What a blessing you are to your mom. I know this may not be an option, or may not be at all what you or your mom would want, but I thought I would throw it out there. When my mom was in the hospital and they said she needed hospice care, I immediately wanted her home in her own bed. However, the hospital powers that be strongly recommended a hospice center b/c of the care. (It is non-profit and was covered by insurance.) The hospital people described the very situation you are in as a possibility if we took her home. My family voted to do the center (I didn't) and my mom went to the center, and I was a little distraught b/c I thought she should be home. However, it turned out to the best thing we ever did. The center had a homey atmosphere and there were nurses on duty round the clock. They had her hooked up to a morphine pump that automatically dispensed the morphine into her IV. They administered extra medication when she needed it (including meds to help her breathing - she was unconscious the whole time, but we could tell when she was in distress). They also changed her nightgowns and diapers, turned her and fixed her pillows so she would not get bedsores, etc. They would gently ask us to leave the room as they did it, which sometimes upset me a bit, but now I realize was not a bad thing. They had rollaway beds so we were able to take shifts sleeping. She only made it a few days there before we lost her, but now I cannot imagine how hard it would have been at home, having to try to get in touch with a nurse on the phone for every need and concern. I am so very sorry you are going through this. Is there any possibility of investigating one of these places and getting her in, if you are open to it? I know this is a very personal, emotional issue and decision. I just want to offer my heartfelt prayers to you and your mom. And yes, call the manager of that hospice and blast them with both barrels. What's happening now is unacceptable., and I pray that you get the help you need. I KNOW how hard it is to watch this process - it's not like you see in the movies. I think it is our nature to struggle against this, no matter what the cirucmstances and how much we know about our condition. And the nights are the longest, it's all so surreal, as you said. What you are experiencing IS normal, but that doesn't make it any less heartbreaking and tragic. But you being there for her to hold onto, you reassuring her and talking to her, that is already making her transition so much easier...whether it seems that way or not... Again, you are a wonderful daughter and your mom appreciates you every moment...don't ever doubt that. I'm so very sorry... Quote Link to comment Share on other sites More sharing options...
onlychild* Posted July 31, 2007 Author Share Posted July 31, 2007 Thank you all so much for your support. It is very much appreciated. I am currently sitting next to my mom who is dying, is expected only to have a few hours left. I am devastated and have periods of major "what if's" running through my head. But we are not alone now. We arrived last night by ambulance transport to a hospice which is amazing. Very compassionate and caring. Is a house converted into a hospice for 8 patients, but they have 31 nurses and the family can stay the night and get home cooked meals. Am so sad we didn't have at least a few days to enjoy this place together as mother and daughter, to relax and to say good byes. Mom has an amazing view of the garden. But I think she felt safe and thus started to shut down today around 2pm. I keep telling her I love her and am here. Yesterday I think I annoyed her by saying it too much and waking her. But today in her deepest sleep before shutting down I cried and said "You are the love of my life, my heart" and she opened her eyes wide and shook her hand, pointing her finger at me and warbled the words "YOU MINE!" The very last response I had from her was when I kissed her cheek and said I loved her and was just going to step out to go to the bathroom, she opened and then closed her eyes, pressed her fingers to her lips and then touched my cheek and smiled. It was the sweetest gentlest smile. It was something she had never done. Am scared when this is over and go home to the empty house after caring for her 24/7 for the past 2 months or so... Many thanks again. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 31, 2007 Share Posted July 31, 2007 I can't even imagine the love and pain in your soul & heart right now. My heart beats faster and harder and truly hurts when I read your posts. My thoughts and prayers are with you and your mom. Being an only child, I can only imagine what you're experiencing. I will be thinking about you both all night. Quote Link to comment Share on other sites More sharing options...
Kirsty Posted July 31, 2007 Share Posted July 31, 2007 So sorry that your Mom is slipping away, but thankful to read that you are in caring hands now. I think you are right, that your Mom felt safe and able to let go - and the distress you described in your first post was very much about her - and you - not feeling safe. You will remember these last few hours with her with love, and you should remember them with pride too because you have done everything a daughter could possibly do to help her. Quote Link to comment Share on other sites More sharing options...
fillise Posted July 31, 2007 Share Posted July 31, 2007 God Bless you. I'm glad you got your mom to a safe and caring environment. We are here for you. Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 31, 2007 Share Posted July 31, 2007 I'm incredibly relieved that you were able to move your mom to safe, caring surroundings -- relieved for you as well as for your mom. With our family's very best wishes and warm Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Don M Posted July 31, 2007 Share Posted July 31, 2007 I am glad you and your mom are in a comfortable place now. You both have my prayers. Don M Quote Link to comment Share on other sites More sharing options...
ladybug Posted August 1, 2007 Share Posted August 1, 2007 Hugs to you. I went through what you are going through 6 months ago today. It was the hardest thing I've ever done. Know that we understand and are here for you... Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted August 1, 2007 Share Posted August 1, 2007 I am praying that your Mom will have a peaceful journey and that You are given the strength to handle the stressful days ahead. Love, Bobby Quote Link to comment Share on other sites More sharing options...
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