SBeth Posted November 1, 2005 Share Posted November 1, 2005 We've been under the care of Hospice for over two weeks now and had some time to adjust to this new way of thinking. It's been very hard (for me) to just sit back and worry about keeping Bill comfortable without feeling the need to found out what is causing this and what is causing that. Is the cancer here, is the cancer there? It doesn't matter, it's not going to change the way we are doing things these days. He's content and at peace with having Hospice in the house. His nurse is wonderful. She comes in once a week, for now, and will come in to the house as often as we ask. She's made sure that his every comfort is met and it is nice to not have to run to the pharmacy. Heck, they have even offered to send out a grief counselor to our home to talk to the kids and myself so that we don't have to worry about leaving Bill to go for an appointment. All in all, it's been a good experience so far...BUT...I wish we weren't here. Every night, after he drifts off into his deep night sleep, I cry myself to sleep wishing and wanting so badly for him to wake up and say to me..."You know what, I think I want to give the Alimta another try, I'm not ready to give up yet." Yes, I know that this is very selfish and feel free to send out the lashes and beatings, but this IS what I want. Yes, I know this is NOT was he wants and so I tell him it is okay, all we need is for him to be comfortable and to hold each other, spend time with our family and tell everyone how much we love them as often as we can. Now...for the real scoop. Toni, his nurse, tells us that he seems to be doing okay. He gets up every morning, takes his shower (still under his own steam) and sometimes he gets dressed, though some days he just puts on a clean t-shirt and lounging pants (we recently found these and love them)and wraps up in one of his new robes. He'll usually set up camp on the family room couch and he'll read or watch tv and drift in and out of sleep most of the day. His pain is very manageable, though we have noticed in the past week it is getting more intense and meds have been increased. His appetite is obsolete and he'll go without food a day or so before he decides to try to eat something. This is truly been a tough issue for me. The ENTIRE Hospice team has told me over and over...don't push food, let him make the call, if he wants something he will tell you, if he doesn't it is okay. Not easy to sit back and not encourage him to eat and watch him go without eating, but I do it. Confusion is getting much worse too. He forgets almost everything he is told, but then on the other hand, he knows EXACTLY how much I spent on a quick two-hour shoppping spree on Saturday and hasn't seemed able to "forget" that figure! Anyway...all in all, we are okay. We both have had some very sad days and nights filled with tears; but we look around us and we know how lucky we are because one thing we have learned for sure is that we have been most fortunate for the time we have had together and the love we have. I log on and read the board every day but have really only posted when I felt I had something worth contributing. I'm praying hard for everyone and rejoicing in all the good news too! I'll be back when time permits. Thank you all so much for the phone calls, emails and pms. We are so blessed to have so many people keeping us in their prayers and thoughts. Love, Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 1, 2005 Share Posted November 1, 2005 Thank you Beth for giving us the update. I am so glad that hospice is there to help as they are wonderful. Don't hesitate to call them if you need them more then once a week. My heart goes out to you and Bill. This is incredibly difficult. I wish I could help in some way with this burden you are carrying. I could however send prayers out to Bill and you. Hang in there, I feel your frustration in wishing Bill would take more treatments. You are not being selfish you just love him so much and want all the time you can with him. On the other hand you know that you have to respect his wishes, which you are doing. You are so brave. Prayers sent. I will light a candle for Bill and put him in my mediation daily prayers. Maryanne Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted November 1, 2005 Share Posted November 1, 2005 Beth, My prayers and thoughts are with you and your family. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 1, 2005 Share Posted November 1, 2005 Beth,thank you for the update.I have been wondering how you and Bill have been doing.I can just envision my wife having the same feelings that you described,and my heart goes out to you. Your both in our prayers. Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted November 1, 2005 Share Posted November 1, 2005 His appetite is obsolete and he'll go without food a day or so before he decides to try to eat something. This is truly been a tough issue for me. The ENTIRE Hospice team has told me over and over...don't push food, let him make the call, if he wants something he will tell you, if he doesn't it is okay. Not easy to sit back and not encourage him to eat and watch him go without eating, but I do it. When my mother was ill these words never came from anyone except Hospice. I guess I don't understand why nutrition and staying hydrated is stressed and emphasized so much by the nurses and physicians when a patient is actively receiving treatment but when Hospice comes in, it is no longer important. I have read over and over on this board about how a caregiver's loved one would not eat(because of lack of appetite)but once the food was prepared and placed before them their appetite might be stimulated and they would then eat. There are meds that will help a persons appetite. My mom used Megestrol and Marinol(before Hospice), and I honestly believe that these meds helped extend her life. Once a person stops eating and drinking they begin on a downward spiral. You know your husband better than Hospice and you know yourself, if you think you need to encourage him to eat and drink that is your right and you should do what you think you need to do. Laura Quote Link to comment Share on other sites More sharing options...
bunny Posted November 1, 2005 Share Posted November 1, 2005 I am so glad to hear from you, Beth. I hear the sadness but I also hear so much love and peace, and I am glad for that. nothing more to say, just know you're in my thoughts and you are being an excellent, excellent partner to Bill. xoxo amie Quote Link to comment Share on other sites More sharing options...
Addie Posted November 1, 2005 Share Posted November 1, 2005 Dear, dear Beth... I've been in a mini-funk (for me) lately...and haven't posted much...but cannot ignore this update from you. I know you are following your heart these days, with what Bill needs and what is most important....and I think that is wise. I can tell how much you wish he had a bit more fight in him....but you know, this is one of the first things I told my husband not long after my initial diagnosis....that there may well come a time when I've had enough treatment...and choose NOT to have any more. I guess I feel it's a patient's right to make this choice....even though we know how desperately our loved ones might want us to continue to fight on. It takes a lot of strength to stand where you do right now, honey...but you're strong and you're wise...and you'll always do right by your Bill, I know this. I'm thinking of you both...sending my very best wishes and hopes. Just enjoy every minute you can...and I think it's pretty terrific that Bill still gets up and showers and moves around a bit most days. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted November 1, 2005 Share Posted November 1, 2005 Oh Beth-I hate this. Bill is my age and I know where he is coming from. Do not worry about the food and fluid issue. I know when a person is actively fighting the cancer we push those things. Nature has a way of dealing with our physical body toward the end. That is why people stop eating, I think it is because the body slows down so they do not need the calories. Try tho to keep him drinking fluids. It helps with the overall better feeling. No dry mouth, less muscle cramping. My mom quit eating and drinking and no amount of pushing helped. So glad he is pain free enjoy the time you have and so glad your Hospice people are so caring. Love Cindy Quote Link to comment Share on other sites More sharing options...
CharlieD Posted November 1, 2005 Share Posted November 1, 2005 Dear Beth, Thanks for letting us know how you guys are doing. It is understanding and normal to feel how you do. Bill is a lucky man to have a wife like you that cares so much and respects his wishes. We are all praying for you and Bill. God Bless. CharlieD Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 1, 2005 Share Posted November 1, 2005 Beth, that was so very sweet of you to share what you and Bill are going through with us all. Through your words, I feel the love and respect you have for him, and it is truly touching. You are both in my thoughts & prayers. Di Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted November 1, 2005 Share Posted November 1, 2005 God, girl, it takes a whole lot of courage for you to do things according to Bill's wishes. You are amazing. If you need anything, please call me. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted November 1, 2005 Share Posted November 1, 2005 . . . .we know how lucky we are because one thing we have learned for sure is that we have been most fortunate for the time we have had together and the love we have. It makes me so happy to know that you are able to focus on this, Beth. Hopefully, I can get my arms around this attitude some day, too, and it will help. I'm so glad to hear that Bill's pain is being managed. It upsets me so much when I read about the ones where they can't seem to control the pain. I, too, wouldn't worry too much about the food, especially if it will upset him and cause any aggravation. I do like the idea, though, about putting it out there and maybe it will sound good or look good and he'll try it. I know if I had tried to push food on Don when he didn't want it, or if anyone tried to push it on me that I would be aggitated. Have you ever had someone coax and coax to try to get you to try something that you know you will hate. LOL! I hate that! Beth, my thoughts and prayers are with you and Bill every single day. Please stay in touch! Love, Peggy Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted November 1, 2005 Share Posted November 1, 2005 Beth I know how hard this is. You, Bill, and your family are in my prayers. Quote Link to comment Share on other sites More sharing options...
Kel M Posted November 1, 2005 Share Posted November 1, 2005 My thoughts and prayers are with Bill, you and your family. Kel Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 1, 2005 Share Posted November 1, 2005 Beth, My thoughts and prayers are with Bill, you and your family. Rich Quote Link to comment Share on other sites More sharing options...
Ann Posted November 1, 2005 Share Posted November 1, 2005 Beth...I'm glad to hear you have help. This will really help a lot with running to the pharmacy. I'm also glad to hear you have a nice nurse. I know this is hard for both you and Bill to deal with. Make the very most of the good days. I'm praying there will be many more good ones than bad ones. Take care of yourself. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted November 1, 2005 Share Posted November 1, 2005 (((Beth & Bill))), God be with the two of you as you go through the days ahead. Beth, come as often as you like and post your feelings. I can only imagine how hard this must be and my heart goes out to you. Love, Sue Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted November 1, 2005 Share Posted November 1, 2005 Thank you for the update. I have had you both on my mind. My heart is with you. Cathy Quote Link to comment Share on other sites More sharing options...
KarHart Posted November 1, 2005 Share Posted November 1, 2005 Beth, I so know how you feel wanting Bill to keep fighting. It is really hard as the caregiver to give up. Ken has told me when his current therapy fails he probably does not want to try anything else. I have devoted the last year to trying everything I could find to keep him going. I think it will be harder on me to quit than him. I am glad Bill is not in pain and the two of you are having peaceful days together. From everything I have read here hospice is such a blessing to both the patient and family. I will continue to keep you both in my prayers. Karen H Quote Link to comment Share on other sites More sharing options...
melindasue37 Posted November 1, 2005 Share Posted November 1, 2005 Beth, Oh, how difficult all of this must be for you. Thank you for taking the time to update us on you both. Remember, that we are with you in thoughts and prayers. It is a comforting thought to know that Bill isn't in any pain. Stay strong...you are an inspiration to so many of us here. Warm Hugs, Melinda Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 1, 2005 Share Posted November 1, 2005 Beth, This is such an emotional time for you and Bill. Wish I had the magic wand to make it all better. Remember, that there are so many here that are thinking about you and can empathize with you. Take care of yourself. Quote Link to comment Share on other sites More sharing options...
jang Posted November 1, 2005 Share Posted November 1, 2005 Beth, What a wonderful, caring wife you are. You should be so proud. My thoughts are with you and Bill and your whole family. Quote Link to comment Share on other sites More sharing options...
TAnn Posted November 1, 2005 Share Posted November 1, 2005 Sending prayers to you and Bill. I know this must be very difficult for you both. We are here for you... TAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 1, 2005 Share Posted November 1, 2005 Beth, this is a very tough time. You are doing better than you probably give yourself credit for. My prayers are with you both. Don Quote Link to comment Share on other sites More sharing options...
Ry Posted November 1, 2005 Share Posted November 1, 2005 I am glad that the hospice is working out for you. I can't begin to imagine how hard this must be for you to go through. Quote Link to comment Share on other sites More sharing options...
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