You are feeling everything that myself and I am sure others felt. We feel cheated of time we should have had left with them. I have been thinking of you and wondering how things were going. I am sorry that she is declining like but it is part of the disease progression unfortunately. I feel it is better for her and for your family to have her at home for when her time comes. I was just like you and thought we had more time, especially when he had that really good day where he was alert, ate ice cream, was talkative. Next day barely anything, two days after that he was gone. What happened to the 2-3 months they told us he might have. Instead all we got was 2 1/2 weeks. This disease is one of the worst there is, it just progresses so fast it's unreal. There is no rhyme or reason as to why their lives are shortened and others live so long. I know my husbands parents ask that everyday as they are both are almost 80 and have out lived their only son. I wish there was something I could say or do to help you through this difficult time. Trust me though you do want the doctors and nurses to be honest and up front about what's going on. I know our hospice nurses were fantastic and honest. When I asked what they thought they were straight forward and told me it was any day. Take each day you have and make memories even if it's just holding her hand or kissing her cheek. Nothing you can do and nothing I can say will prepare you for the day that is to come. Do not hold back your grief though because that will only make you feel worse. I am just so sorry it has come to this point so soon. I know you are afraid to bring her home but that's what hospice is for, they have your back and there for you 24/7, take advantage and do not be afraid to call them. I am still praying for you and your family. Please keep me posted.
Thank you again...I haven't been on much because I've been spending time with my mom. Last week she was alert, talkative, eating and drinking and this week started. She's saying goofy things, she's less alert and sleeping more. She hasn't been eating and her drinking is slowing. We are moving her out of the hospital today...she will come home. The social worker said days. The VNA hasn't talked to us. Last Wednesday my mom asked that I take her shopping one more time...and I want to so bad. I would do anything for her. Maybe I'm a fool for thinking it would happen but I'm devastated to hear days. I guess last week gave me hope...I don't understand why they thought we would get her to rehab before comfort care and now she has days...it's not like they were doing something to keep her alive previously. Is this the progression of the disease? Does it take over this fast? I am so lost right now. Maybe I was naive to think we had more time. She shocked doctors by her eating/drinking/alertness last week...they said well, not days but not months...where previously they said days/weeks. I guess same comment but days was taken off the table. Why does my grandma get to live to 93 and my mom only 69? Why did she have to endure so much pain? She hasn't really gotten out of bed since August 1st...when the fistula was created. Friday will be 4 months since diagnosis and she's dying. Saturday is 4 months since removal of tumor for biopsy...why is this happening? I know I'm asking questions that can't be answered. I know many others have dealt with this and will continue to deal with this. I just feel robbed....I am mad that they misdiagnosed her in April/May with an UTI. 3 rounds of antibiotics for nothing. WASTED TIME! I'm afraid to bring her home...I'm afraid of what's next to come. I won't have the monitors telling me her heart rate and oxygen levels. I won't have anything to give me an indication. Thank you for listening. I'm so scared of living without her.
You're quite welcome. I am just happy I could help even if it was in just a small way. I will continue to pray for you all and I am here if you need to talk. It helps me just as much as it helps you. Thank you!!
Thank you for your ideas...I got her some pouch applesauce. She really liked it and ate two of them. She loves McDonald's tea for some reason so we got her some. She has been sipping on it.
It's amazing the difference between today and yesterday. I thought for sure she was never going to say she loves me and today she's talking and interacting. I feel better about leaving today but I need to be aware that this could all change again. She did tell me she's sorry to leave the grandkids and I asked her if I was chopped liver..finally got a smile. She said there is too much wrong with a tumor in her pelvis and multiple tumors in her liver - that no reason for hope anymore. She's right and it was crushing to hear.
Thank you again for your support - meeting by chance and unfortunate circumstances but you've made a huge difference for me. I can't thank you enough.
I wish we had met outside of this as well. This is rough to go through alone not know what each day holds. Trust me every day is different. Try just getting some soup broth, pudding or applesauce down her, even if it's just a couple bites at a time. Jeff really like crushed ice so I spoon fed that to him. Try and keep as much stimulation going as possible, just sitting on side of bed for a little bit here and there if she is able. Jeff wanted close to a window so he could see the birds outside so that's what we did. Her vitals will be all over the place, just part of it. If you feel she is becoming dehydrated just let hospice know. Our hospice came and hooked up an IV of fluids and ran it in slowly. Just part of keeping them comfortable. You are not being ridiculous either in wishing for more time. With God anything is possible. But he also will not let her suffer more than He wants. It's comforting to know she is looking forward to going to heaven. Some do not have that privilege. She sounds like a wonderful, strong woman which I am sure has been passed to you. Just don't try to be so strong that you ignore YOU. It's okay for your kids to see you cry and it's okay for your mother to see you cry. It's relief for all of you. Thinking of you. Tammy
Thank you for your reply...I had wished I knew you outside of here on Saturday to ask what to expect next. Or how can I handle this? Or how do I not be upset about her decision?
I did talk to the care team and they adjusted her meds and she's not in pain and is more talkative today than yesterday. While I know that might change as time goes on, I am loving having her here today. I know the emotions will surface again when it's different, but I'm doing my best to take it day by day. I told her I was proud of the fight she put up and she said she's trying. I don't know if she's still really trying but I wanted her to know she's worked hard to beat this evil cancer. She isn't wanting to eat but is drinking water. I don't think she's eaten since Friday. Her swelling has gone down but her blood pressure was high. They only take vitals when I ask, otherwise, nothing to monitor. She has been wanting solid bowel movements for a month and now that they stopped all care with the exception of pain meds...she is getting that. Of course that gives me hope we can get her stronger and maybe spend another holiday with us. Then I remind myself that I'm being ridiculous. My mind is like a ping pong match right now.
Thank you so much for listening and replying. I hate that you had to go thru this and I wish I could take this away for you and everyone else.