Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Bruce, Your words are very reassuring and came at the right time for me. When I have a few really bad days, I start worrying that my time is near. I have 5 grown kids but one of my daughters is extremely close to me and she is so sad about my illness and the idea of losing me. it makes me not know what to say to her because I want to help her. We lost my Mom 2 years ago to lung cancer and watched her die over 4 weeks time and it will forever be etched in our minds. She doesn't seem strong enough yet to handle another loss. I never miss a day or opportunity to tell her how much I love her. That's the one thing I learned from this illness is not waiting until tomorrow to tell those you love. I've been reading everyone's messages and can see just how unique and special everyone is. i'm so happy to have found you all! And if I miss replying to anyone who's written me, i apologize..i am still figuring out how it all works! Judybrown63, IPF, 04/07, SC Re: Judy Hand held makes a lot of sense, but even if under a shower head, you can still wear the oxygen. These hoses just aren't that fragile. We're at all stages and all have different issues, Judy. But rest assured you'll see incredible strength and courage in those further along than you. The best examples to me are Gwynne and Joyce. I've had the good fortune of meeting Gwynne. What an incredible two and a half hour lunch. Of course she and I knew the facts on each other but had I not, I never would have believed it. Those further along are my role models as I get there. They are also my mentors. Gwynne even led me to a great oxygen provider, and the oxyview glasses may follow. I may follow her to the same transplant center. But I see Joyce at Christmas, I see Gwynne, I gain so much strength and courage for the future. Do I worry about them both? Oh yes, very much. But I feel so blessed to know them. They serve as reminders not to miss any opportunity to make the most of things in my current condition and they serve to let me know that even as it worsens life can have quality and value. I'm glad they share the bad as well. One I want to just hug and support them and let them cry on my shoulders and cry with them. But too, it shows me the whole picture and helps me prepare for reality, not what I wish reality was. While my oxygen requirements are relatively low, I realize, as I think you're sensing on yourself, that I was probably diagnosed later than most. But, all I can do is live in the present and enjoy it as much as possible, then try to do the same at each stage. Our diversity here in every respect is so valuable. > >> > Hi Judy.> > I can totally relate about the difficulty with baths and> > showers. As we progress, more things that take upper> > body strength sap our air. But I noticed you said> > your 02 is "close by". Sounds to me like you need to> > be wearing it. You're sats are probably dropping.> > You're smart to have a stool. Some people dry off> > while they're still sitting in the shower. I have to sit> > before, during, and after I dry off. Some just put on> > a thick terrycloth robe instead. It takes some> > experimenting to find out what's best for you, but> > it will still probably be a challenge. The sob is cruel.> > > > When I wasn't up to a shower, sometimes I used to> > wash my hair in the sink. Now that's a problem, as> > is anything that involves bending over, even washing> > my face. It's all royally inconvenient and frustrating.> > I oxygenate at 98 or 99% on continuous air when I'm> > sitting down, but it often falls into the 70's with any> > activity, even on 15L. I'm sorry you're having to> > experience the exhausting, scary, and sad feeling of> > a decline. It's bad enough when it creeps up on you,> > but it's especially scary when it hits you fast like a> > brick in the head. You are absolutely right to> > concentrate on what we CAN still do, though. Our> > attitudes help us when all else fails, and I can tell> > you have a great one. Hang in there!> > > > Hugs and blessings,> > Gwynne IPF 7/04 listed for transplant 3/07 Texas> >> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 I think it just becomes a time to really have an honest and open talk with the daughter who is so close. That includes telling her how you feel about the disease, how you feel about death. It also hopefully gets her to open up and express anger or whatever feelings she has. It can lead to a good cry together or just a better understanding. Talk to her about the stages and what you want at each stage if that time comes. I honestly believe those close to me are doing better because I've been clear and completely open. They know I'm comfortable with whatever comes although this isn't what I would have chosen. We talk honestly. For instance, I can talk to my ex-wife, closest family, about buying a car and the fact maybe getting a used one with 20,000-30,000 on it makes sense, since I'll never reach the point of where one really starts to give trouble from there. It sounds a bit blunt and cold but when done in the right way its not. Its just dealing with possible and probable future events but I also believe the more you can get her to deal with it now, the less painful it will be later for her. If you feel its overwhelming her, then I'd strongly suggest counseling. They'll get her to admit the sadness is really lots of anger. Then she can deal with that. > > > > > > Hi Judy. > > > I can totally relate about the difficulty with baths and > > > showers. As we progress, more things that take upper > > > body strength sap our air. But I noticed you said > > > your 02 is " close by " . Sounds to me like you need to > > > be wearing it. You're sats are probably dropping. > > > You're smart to have a stool. Some people dry off > > > while they're still sitting in the shower. I have to sit > > > before, during, and after I dry off. Some just put on > > > a thick terrycloth robe instead. It takes some > > > experimenting to find out what's best for you, but > > > it will still probably be a challenge. The sob is cruel. > > > > > > When I wasn't up to a shower, sometimes I used to > > > wash my hair in the sink. Now that's a problem, as > > > is anything that involves bending over, even washing > > > my face. It's all royally inconvenient and frustrating. > > > I oxygenate at 98 or 99% on continuous air when I'm > > > sitting down, but it often falls into the 70's with any > > > activity, even on 15L. I'm sorry you're having to > > > experience the exhausting, scary, and sad feeling of > > > a decline. It's bad enough when it creeps up on you, > > > but it's especially scary when it hits you fast like a > > > brick in the head. You are absolutely right to > > > concentrate on what we CAN still do, though. Our > > > attitudes help us when all else fails, and I can tell > > > you have a great one. Hang in there! > > > > > > Hugs and blessings, > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > ______________________________________________________________________ ______________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Judy...did I miss your daughter's age? That can affect how you will talk to her. If she is an adult, keep in mind that she doesn't want to have to go through this. That thought can make her feel ashamed because she loves you so. She may be afraid of not meeting your needs along the way too. Shucks, the bottom line is she just can't imagine her life without you and you can't help her with that reality. The death of her grandmother is still so fresh. Grief takes time. Your daughter is already grieving for you Judy..... You're a mom, you'll handle it ok. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: Judy I think it just becomes a time to really have an honest and open talk with the daughter who is so close. That includes telling her how you feel about the disease, how you feel about death. It also hopefully gets her to open up and express anger or whatever feelings she has. It can lead to a good cry together or just a better understanding. Talk to her about the stages and what you want at each stage if that time comes. I honestly believe those close to me are doing better because I've been clear and completely open. They know I'm comfortable with whatever comes although this isn't what I would have chosen. We talk honestly. For instance, I can talk to my ex-wife, closest family, about buying a car and the fact maybe getting a used one with 20,000-30,000 on it makes sense, since I'll never reach the point of where one really starts to give trouble from there. It sounds a bit blunt and cold but when done in the right way its not. Its just dealing with possible and probable future events but I also believe the more you can get her to deal with it now, the less painful it will be later for her. If you feel its overwhelming her, then I'd strongly suggest counseling. They'll get her to admit the sadness is really lots of anger. Then she can deal with that. > > >> > > Hi Judy.> > > I can totally relate about the difficulty with baths and> > > showers. As we progress, more things that take upper> > > body strength sap our air. But I noticed you said> > > your 02 is "close by". Sounds to me like you need to> > > be wearing it. You're sats are probably dropping.> > > You're smart to have a stool. Some people dry off> > > while they're still sitting in the shower. I have to sit> > > before, during, and after I dry off. Some just put on> > > a thick terrycloth robe instead. It takes some> > > experimenting to find out what's best for you, but> > > it will still probably be a challenge. The sob is cruel.> > > > > > When I wasn't up to a shower, sometimes I used to> > > wash my hair in the sink. Now that's a problem, as> > > is anything that involves bending over, even washing> > > my face. It's all royally inconvenient and frustrating.> > > I oxygenate at 98 or 99% on continuous air when I'm> > > sitting down, but it often falls into the 70's with any> > > activity, even on 15L. I'm sorry you're having to> > > experience the exhausting, scary, and sad feeling of> > > a decline. It's bad enough when it creeps up on you,> > > but it's especially scary when it hits you fast like a> > > brick in the head. You are absolutely right to> > > concentrate on what we CAN still do, though. Our> > > attitudes help us when all else fails, and I can tell> > > you have a great one. Hang in there!> > > > > > Hugs and blessings,> > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > >> >> > > > > > ________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Sher, Bruce, My daughter Debbie is 44. She was extremely close with my Mom going to the mall with her every Wed. for the last 20 years so It's understandable why she is still grieving. As for me, she and I talk all the time, we've had lots of crying and frank talk. She's just not handling it well and I can see she is depressed about it. There's no chance she will talk to someone about it. I think there is also alot of guilt because she lives 10 hrs. away and if she was closer, she'd be right by my side. I guess this is an issue we all face and there are times when I think I'm handling it ok and suddenly I will start crying and questioning WHY. I feel a lot of strength and bravery within this group as well as compassion. I will never be able to express how much it means to me. thank you! judybrown63, IPF,.4/07, SC Re: Judy I think it just becomes a time to really have an honest and open talk with the daughter who is so close. That includes telling her how you feel about the disease, how you feel about death. It also hopefully gets her to open up and express anger or whatever feelings she has. It can lead to a good cry together or just a better understanding. Talk to her about the stages and what you want at each stage if that time comes. I honestly believe those close to me are doing better because I've been clear and completely open. They know I'm comfortable with whatever comes although this isn't what I would have chosen. We talk honestly. For instance, I can talk to my ex-wife, closest family, about buying a car and the fact maybe getting a used one with 20,000-30,000 on it makes sense, since I'll never reach the point of where one really starts to give trouble from there. It sounds a bit blunt and cold but when done in the right way its not. Its just dealing with possible and probable future events but I also believe the more you can get her to deal with it now, the less painful it will be later for her. If you feel its overwhelming her, then I'd strongly suggest counseling. They'll get her to admit the sadness is really lots of anger. Then she can deal with that. > > >> > > Hi Judy.> > > I can totally relate about the difficulty with baths and> > > showers. As we progress, more things that take upper> > > body strength sap our air. But I noticed you said> > > your 02 is "close by". Sounds to me like you need to> > > be wearing it. You're sats are probably dropping.> > > You're smart to have a stool. Some people dry off> > > while they're still sitting in the shower. I have to sit> > > before, during, and after I dry off. Some just put on> > > a thick terrycloth robe instead. It takes some> > > experimenting to find out what's best for you, but> > > it will still probably be a challenge. The sob is cruel.> > > > > > When I wasn't up to a shower, sometimes I used to> > > wash my hair in the sink. Now that's a problem, as> > > is anything that involves bending over, even washing> > > my face. It's all royally inconvenient and frustrating.> > > I oxygenate at 98 or 99% on continuous air when I'm> > > sitting down, but it often falls into the 70's with any> > > activity, even on 15L. I'm sorry you're having to> > > experience the exhausting, scary, and sad feeling of> > > a decline. It's bad enough when it creeps up on you,> > > but it's especially scary when it hits you fast like a> > > brick in the head. You are absolutely right to> > > concentrate on what we CAN still do, though. Our> > > attitudes help us when all else fails, and I can tell> > > you have a great one. Hang in there!> > > > > > Hugs and blessings,> > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > >> >> > > > > > ____________ _________ _________ _________ _________ _________ _____________ __> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Judy...Everything you (and Debbie) are feeling is so what the rest of us feel. And our kids. Not all, but the ones who regularly post, talk about what you say. You're new to the board so haven't read the posts on this subject. When I first told my daughter, Lysa -44 too- she nearly had convulsions dealing with the thought of being without me...We are so close. Now we can talk about 'it' with sadness but not always with tears. My other daughter, Zoe -39, didn't want to talk about it at all. Only now after about 2 years can I talk about 'it' in a general term. She stuffs things and she and I aren't as close to begin with but we are getting closer. The distance between you is closed easily in this day and age. Free l/d on cell phones, email and freeways. Lysa lives about 45 min. away and I 'see' her maybe once e/6 weeks but we talk on the phone sometimes 2-3xs/day and sometimes for an hour or more! Rich can't figure out how we have anything more to say to each other.lol I feel what you describe feeling too. We can't do one thing about it except feel the feelings and go on............. If you are familiar with the Serenity Prayer, it's what I say many times a day. Especially the "Serenity to accept the things I cannot change". Warm Hugs to you! Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: Judy I think it just becomes a time to really have an honest and open talk with the daughter who is so close. That includes telling her how you feel about the disease, how you feel about death. It also hopefully gets her to open up and express anger or whatever feelings she has. It can lead to a good cry together or just a better understanding. Talk to her about the stages and what you want at each stage if that time comes. I honestly believe those close to me are doing better because I've been clear and completely open. They know I'm comfortable with whatever comes although this isn't what I would have chosen. We talk honestly. For instance, I can talk to my ex-wife, closest family, about buying a car and the fact maybe getting a used one with 20,000-30,000 on it makes sense, since I'll never reach the point of where one really starts to give trouble from there. It sounds a bit blunt and cold but when done in the right way its not. Its just dealing with possible and probable future events but I also believe the more you can get her to deal with it now, the less painful it will be later for her. If you feel its overwhelming her, then I'd strongly suggest counseling. They'll get her to admit the sadness is really lots of anger. Then she can deal with that. > > >> > > Hi Judy.> > > I can totally relate about the difficulty with baths and> > > showers. As we progress, more things that take upper> > > body strength sap our air. But I noticed you said> > > your 02 is "close by". Sounds to me like you need to> > > be wearing it. You're sats are probably dropping.> > > You're smart to have a stool. Some people dry off> > > while they're still sitting in the shower. I have to sit> > > before, during, and after I dry off. Some just put on> > > a thick terrycloth robe instead. It takes some> > > experimenting to find out what's best for you, but> > > it will still probably be a challenge. The sob is cruel.> > > > > > When I wasn't up to a shower, sometimes I used to> > > wash my hair in the sink. Now that's a problem, as> > > is anything that involves bending over, even washing> > > my face. It's all royally inconvenient and frustrating.> > > I oxygenate at 98 or 99% on continuous air when I'm> > > sitting down, but it often falls into the 70's with any> > > activity, even on 15L. I'm sorry you're having to> > > experience the exhausting, scary, and sad feeling of> > > a decline. It's bad enough when it creeps up on you,> > > but it's especially scary when it hits you fast like a> > > brick in the head. You are absolutely right to> > > concentrate on what we CAN still do, though. Our> > > attitudes help us when all else fails, and I can tell> > > you have a great one. Hang in there!> > > > > > Hugs and blessings,> > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > >> >> > > > > > ____________ _________ _________ _________ _________ _________ _____________ __> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
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