kimblanchard Posted January 30, 2005 Share Posted January 30, 2005 Stand4hope, you have encouraged me yet again. I decided to do a little update. Hmm, a bit about hospice. Hospice people came Wednesday, lots of forms, questions, answers, met with the nurse and social worker, took about 4 hours. The RN will come twice a week. The social worker will come twice per month, more if needed or wanted. Home health care aide and chaplain and volunteers are available as needed. Think I am going to see about a once a week volunteer and take myself a library afternoon. They are going to bring us a hospital bed, easier for Jim to get in and out and up and down in, and a wheelchair with a bracket for his oxygen, so we can go for walks outside if ever the weather improves, and a better shower chair than we have now. Stuff didn't come yet but I made a place in the living room for the bed, right in the middle of everything. Jim will have two TVs in here, the satelite one and the local one with rabbit ears. And music and whatever he wants, of course. The experience continues much the same, up and down, but now the goals are changed. The goal is "don't worry, be happy." I guess. If we have concerns we call them, not 911. If something happens, I call them and they come here and help us. In our case, they pay for the meds but we still have get them from the drugstore ourselves. Things are a bit more regulated than we are used to, for example, if Jim changes meds, the nurse wants the old meds and will destroy them with me to witness. Hmm, just like in hospitals and all. I am more used to independence on things like that. I think maybe they are more used to dealing with the elderly? We both felt a bit baffled at first. Look at each other, shrug, huh? Initially, Jim felt a lot happier, felt like he had more in his control now, if he ate well, took care, his health was more in his own hands. I kind of don't know what to do with myself. All systems will change I guess, all the piles of paperwork can be filed away. I haven't done that yet. This still seems like an on-going project, and of course it is. It is just a change of philosophy. I feel a bit adrift, until I get used to it. Physically - more sleeping, more tiredness, more short of breath. By Saturday, Jim had difficulty getting up and walking to the kitchen without losing his breath. We raised the oxygen from 2 to 3 and broke tasks into smaller increments. More anxiety. More - fogginess. I got a calendar and put by the bed and we write down who came, who called, which day, and cross of the days when they are over. It helps. Lots and Lots of company. Short visits are good. I am not on the email much as a lot of the day we spend together, him in bed, me in a rocker next to him. I have been doing markers and fuzzy posters, not that I am that good at it or really needed fuzzy posters but it is a kind of easy way to pass the time and I get to make decisions on what color I want that flower, etc. Jim cheers me on, ha, ha. When I am out and about in the house, and I peek in on him, every darn time he opens one eye and looks right back at me. He says it is like how you can feel when people are sneaking up on you. He is so cute. Grin. He does need some checking, too, he pulls his oxygen off sometimes when he is sleeping. I like to get up in the middle of the night and check this board. I wake up a lot anyway and everything is quiet here at home. I always did like early mornings, before the day's activities get started. We are okay. It has scarey moments, but this whole trip has had those moments. Love to all, Margaret Quote Link to comment Share on other sites More sharing options...
SBeth Posted January 30, 2005 Share Posted January 30, 2005 Margaret, As usual, your posts are so inspiring and give me such comfort. You are a most admirable woman and wife. May God bless and take care of you and Jim on the road ahead. All my love and prayers, Quote Link to comment Share on other sites More sharing options...
betplace Posted January 31, 2005 Share Posted January 31, 2005 As you go through this new journey, it seems to me you have made all the right choices to make it as good a time for you both as possible. I know inside your heart is breaking and you can't even let him see,(though he does) but you are doing it in a beautiful wonderful way, I will pray for you to have the strength to see this through and that it be as easy a journey as possible for your beloved Jim. Blessings Betty Quote Link to comment Share on other sites More sharing options...
appleton Posted January 31, 2005 Share Posted January 31, 2005 Thank you so much for sharing this with us............ Quote Link to comment Share on other sites More sharing options...
stand4hope Posted January 31, 2005 Share Posted January 31, 2005 Margaret, Sounds like you both are making the best of this situation that you can. You are projecting a feeling of peace to all of us, and we need to hear that. Bless you! I'm glad to hear that you are going to take an afternoon for yourself. Hang in there. God is near. Love, Peggy Quote Link to comment Share on other sites More sharing options...
SandyS Posted January 31, 2005 Share Posted January 31, 2005 Margaret - Your attitude and outlook are inspiration for us all... Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted January 31, 2005 Share Posted January 31, 2005 Margaret, as always I am sorry to hear of Jim's continued and worsened short of breath.Glad your able to be together and amazed at your strength and fortitude.You are both tremendous inspirations to so many of us. I think once you can get used to the added activity in your home it will be much easier for you,& afford you even more time with Jim. Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted January 31, 2005 Share Posted January 31, 2005 Dearest Margaret< I pray that God will grant you peace and serenity in the days to come. Give Jim a "BIG SQUEEZE" from my family in Alabama. In my thoughts and prayers~~~ Angie Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 31, 2005 Share Posted January 31, 2005 wishing you peace Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 31, 2005 Share Posted January 31, 2005 Wishing you strength, peace, and love on this difficult journey. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 31, 2005 Share Posted January 31, 2005 Margaret, All my best to you and Jim. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Elaine Posted January 31, 2005 Share Posted January 31, 2005 Margaret, You might try using a fan or opening a window. Sometimes air can help with SOB. I guess ask hospice about this. I think of the two of you often. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 31, 2005 Share Posted January 31, 2005 Margaret, Wishing you peace, strength and love. For Jim: when he goes to sleep, just tape the tubing to his cheeks, that is what I did for Mike as he was always pulling his oxygen of during the night. It worked well. Will be thinking of you and Jim. Sending prayers. xoxo J.C. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 31, 2005 Share Posted January 31, 2005 Dear Margaret, I think of you and Jim so often and send prayers that God grants you what you need at this sad time. I found that hospice gave me the peace of mind that I needed during the journey. I was glad to know that Earl would not be in pain or have undo anxiety. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 31, 2005 Share Posted January 31, 2005 Gosh, dittos to what everyone else said. but Margaret, you truly are an inspiration and everything you say is so beautiful. I feel like I'm right there with you and it gives me such a sense of peace. God Bless, Karen Quote Link to comment Share on other sites More sharing options...
KarHart Posted January 31, 2005 Share Posted January 31, 2005 Margaret, I know what you mean about waking in the middle of the night. Thanks for taking the time to update us. You truly are an inspiration. I keep you in Jim in my prayers. Karen Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted February 1, 2005 Share Posted February 1, 2005 You just write us and let us know day to day how it going. You are in my prayers. Love Cindy Quote Link to comment Share on other sites More sharing options...
Amy P Posted February 1, 2005 Share Posted February 1, 2005 Margaret - Your words are so beautiful it brought tears to my eyes. I will be praying for the both of you in the coming weeks. As others have said, YOU are an inspiration! Much Love, Amy Quote Link to comment Share on other sites More sharing options...
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