gerbil runner Posted December 3, 2005 Share Posted December 3, 2005 After a mostly successful battle over the past 2 years, my mother is now dying of SCLC due to the brain mets. Despite our sorrow, my dad and I are doing okay. Just want to take a few moments and pass on what is helping us. We have always looked for the most aggressive treatment, and researched all the options given us. So there is no regret about how treatment could have been done differently. We have encouraged Mom to do everything she wants. We have looked at every major holiday as a potential "last chance" in terms of effort put into the quality. We have held onto hope. What we hope for has changed, but we still feel hope. We have insisted on testing for problems other than cancer which can threaten life (which saved Mom's life in April). It's very hard to think of "final arrangements" and what is expected afterwards. Because my mother was initially diagnosed with pancreatic cancer and not expected to live more than a few weeks, we had to sort out feelings on what Mom wants family members to have from her belongings, and how she feels about Dad keeping his hobbies and moving on after she is gone. The one piece of advice I would give anyone who asked is, make as many "final" decisions as you can as soon as you can. Get it out of the way so you can get on with living the rest of your life. Dying is hard enough to witness without worrying about carrying out your loved one's wishes. We are fortunate. Mom is home and comfortable. We feel no need to pester her with questions. My dad keeps his rehearsals and concerts, knowing it's what Mom would want. So we concentrate on keeping Mom company, on remembering the here and now. We don't get everything right, and we still want Mom to recover and stay with us another 20 years, but it will be okay. My dad and I have tried to educate ourselves about "end of life" scenarios, so we feel less fear and uncertainty in caring for Mom. Learning what symptoms come at the end of life help keep us from watching every breath and wondering if it's her last. We'd rather chat with her than count her respirations. Ignorance is not bliss. We all die, and there are matters which to which we should attend before that time. Get your homework done so you don't have to think about it when you go out to play. That's not giving up hope - it's just finishing your taxes before April 15th. We'll never really be "ready" to say goodbye, but Dad and I will know we've done everything for Mom that she has wanted. It helps. Quote Link to comment Share on other sites More sharing options...
Connie B Posted December 3, 2005 Share Posted December 3, 2005 I'm sorry Jen that your family is in need of Hospcie, but how thankful we are to the wonderful people at hospice. Sounds like you are tryng to get all your ducks in a row the best way you know how. It's not an esay task, but it can be done with dignity and grace. My best wishes are being sent to you all Jen. I'm sorry your all having to turn down the ending days of this journey. Please know your not alone. Prayers and Strength to All. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 3, 2005 Share Posted December 3, 2005 Jen, your post is an inspiration. Death is a reality but never easy. I tried to do the same things as you through Earl's illness. We tried to get the absolute best tx for him and then to live life as normal as possible. When we told there were no other options, then it became my mission to make Earl as happy and comfortable as possible. Losing him was the worse thing that ever happened to me, but I rejoice in the many years I had with him. I grieve for him every minute of every day but not morosely, he would not have wanted that. I usually have a smile on my face and continue with a busy and happy life. That is what he wanted for me and it is what your Mother wants for her family. Bless you all during this sad time. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 3, 2005 Share Posted December 3, 2005 Jen, I am so very sorry to hear that your mom has reached this point in her journey. You and your family sound so at peace with your decisions . My thoughts and my prayers go out to you. I hope hospice will be very helpful . Love, Sue Quote Link to comment Share on other sites More sharing options...
Kasey Posted December 3, 2005 Share Posted December 3, 2005 Jen, What a generous post you have offered us. In light of losing you own dear Mother, you are trying to help the rest of us to be able to cope the best as we can by guiding us with what you have already learned. Bless you for that. I will continue to pray for your Mother and whole family during this time. Hopefully there still is lots more living you can pack in to the remaining time. Kasey Quote Link to comment Share on other sites More sharing options...
Ry Posted December 3, 2005 Share Posted December 3, 2005 Thank you for taking the time to post about your experience. It's excellent advice and will help lots of members. Rochelle Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted December 3, 2005 Share Posted December 3, 2005 Sorry to hear this news Jen. I know how hard it is for you right now. I admire you for being so strong and being able to accept thing the way they are. Keep us posted. Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted December 3, 2005 Share Posted December 3, 2005 Jen that was a great post full of good advice. Your family is in my prayers. Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted December 3, 2005 Share Posted December 3, 2005 Jen, it sounds like you and I are on the same road. My Dad went into hospice a couple of months ago. We too are trying to get all the business of dying completed quickly, so we can just enjoy every day together without thinking of dying. It is not an easy thing to do. I hope you have a wonderful holiday season with your Mom. Denise Quote Link to comment Share on other sites More sharing options...
Patkid Posted December 3, 2005 Share Posted December 3, 2005 Thank you, Jen, for your generosity of spirit. We have your family in prayer and are grateful for your peace. Love Pat Quote Link to comment Share on other sites More sharing options...
ma's kid Posted December 3, 2005 Share Posted December 3, 2005 What a beautiful and inspirational post, Jen. God bless your entire family. Libby Quote Link to comment Share on other sites More sharing options...
SBeth Posted December 3, 2005 Share Posted December 3, 2005 Jen, There is much wisdom in all you have posted. I agree with Ry, your post will help many. Thank you for sharing and my prayers will be with you and your family. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 3, 2005 Share Posted December 3, 2005 thank you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 3, 2005 Share Posted December 3, 2005 Thank you Jen for your post. You will help a lot of people with it. I went through a similar process when Mike was leaving me, all was done so we could concentrate on life now and keep every moment left for ourselves. It doesn't take the pain away but it gives more time to spend on and with the person that needs it the most. Prayers on the way for all. J.C. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted December 3, 2005 Share Posted December 3, 2005 Jen, What you suggest is good advice for anyone and everyone, and not just those facing the things we all face in the near/not so near future. You did your homework; you've done it all along. And that is the best advice of all, to not wait until the last minute to try to find answers and solutions for questions and problems that require advance preparation or immediate answers. I keep you and Bell Ringer in my prayers every day. I always have. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 4, 2005 Share Posted December 4, 2005 Jen, I'm praying for you and your Mom. It's not an easy road you travel. I am going to pray specifically that you will have an as much time for abundant life as you can with your Mama. Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 4, 2005 Share Posted December 4, 2005 Please know that my prayers and profound respect go out for you, your mother and family. Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted December 4, 2005 Share Posted December 4, 2005 Very wonderfull and heartwarming. Your mom is very lucky to have you. My prayers are with you for a chance to have this one last Christmas with her. Make many memories every minute that you can. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 5, 2005 Share Posted December 5, 2005 Thanks Jen and I am sorry you have to go through this too. What I want to kow is how to get the conversation going without feeling like you have given up hope. Partt of my stress and anxiety is bc we have no clue what mom wants. Before cancer, she never wanted a funeral and wanted to donate organs. Now it is not possible, but we have never talked with her about it bc of the sensitivity of it. Everyone here says it will come up when appropriate and I pray they are right, but for now, I worry so much that something will just happen and we will be left wondering... Quote Link to comment Share on other sites More sharing options...
Ann Posted December 5, 2005 Share Posted December 5, 2005 Jen, I am so sorry to hear that things have come to this point but am so inspired by the strength you are exhibiting in dealing with this tragedy. I totally believe that we should spend time alive living, rather than wasting time getting ready for death. That is one valuable lesson I have learned as a member of this group. When Dennis was ill, I think I wasted too much time worrying about his death and what I would do when that time came. I'm keeping you and your family in my prayers! Quote Link to comment Share on other sites More sharing options...
Don M Posted December 9, 2005 Share Posted December 9, 2005 Jen: you wrote a thoghtful post that shows grace. I will pray for you and your mom and family. Don M Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted December 9, 2005 Author Share Posted December 9, 2005 Lori, there was actually a time early in our journey that we thought we were going to lose Mom without a chance to talk. She had a bronchoscopy to get a biopsy of the lung tumor, and she started to bleed. She was put on a ventilator, and at first the doctors thought she would die from the bleeding. My dad freaked out - he had no idea whether Mom would want to be cremated or buried, where she would want to be buried, nothing of that sort. But after being married for so long, I gently reminded him that he knew quite well that Mom had always said that funerals and cemeteries were really for the living, not the dead. And that whatever he did in his love for her would be just fine, in her opinion. So if worse comes to worst, you will be able to make decisions your Mom could accept. That being said, there may never be a "perfect" time to bring it up. Try telling her, "I know you're fighting hard and doing well, but I want to be able to do my best for you. If you suddenly couldn't talk to us, because of a stroke or brain met, what would you want us to know? I don't want to guess what you consider most important. You don't have to tell me right now, just think about it, please. It would be one less thing for me to worry about. I'd do anything you'd want, but I worry you might not be able to tell me." Maybe you could offer your ideas on what you would want for yourself. After all, you drive to visit her, and that's risky business (think of Snowflake's beer truck). I ran that by my Mom after WBR for her brain mets had brought her personality back. And it was awhile before she was ready to talk, but it made her able to think of it in terms of taking worry away from others, rather than admitting the end was near. She hasn't said she knows she is dying, so we don't tell her she's dying, but since the bases are covered, it's ok. I pray you will find the answers you need, and then not need them for a very long time. Quote Link to comment Share on other sites More sharing options...
Ladyintheglen Posted December 9, 2005 Share Posted December 9, 2005 Dearest Jen, I am so sorry that this journey took this turn for you. Just know that I admire your grace and pray for your entire family. You are a God-send. Cheryl Quote Link to comment Share on other sites More sharing options...
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