I have CF I'm getting up there in my age and in the "End Stage" of my disease. My husband and I were quite put off by those words written by the doctor. We know why they write this because of thee numbers and all the scientific gathers they find. But " End stages could go on for a long time.. The way they make it sound is that my days are numbered. If we didn't have a healthy perspective on this subject I might plunge into depression and perhaps get worse . What I am writing about is that my husband and I decided to look into the support provided by Hospice so that we could build relationships and My husband could have the support that he will so badly need when that process of getting more ill comes. We have now run into some very difficult questions about what to ask Hospice to do. The thing is at this point in our lives together we want to spend quality time together which makes it difficult to balance our need for help with our desires to spend as much time together as possible. The questions we have are are there any couples or single CF 's that are able to share a very delicate subject and their own experiences with "End of life" care? The other question is how do we determine what we need for help and how to ask for it. Up till now have been very self sufficient . We find this very difficult. If you would like to private message me perhaps we can learn something. <br><br>JenWren CF\ Diabetes, <br>Husband : Mine<br>
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New way to think of hospice
- Thread starter JenWren
- Start date
I have CF I'm getting up there in my age and in the "End Stage" of my disease. My husband and I were quite put off by those words written by the doctor. We know why they write this because of thee numbers and all the scientific gathers they find. But " End stages could go on for a long time.. The way they make it sound is that my days are numbered. If we didn't have a healthy perspective on this subject I might plunge into depression and perhaps get worse . What I am writing about is that my husband and I decided to look into the support provided by Hospice so that we could build relationships and My husband could have the support that he will so badly need when that process of getting more ill comes. We have now run into some very difficult questions about what to ask Hospice to do. The thing is at this point in our lives together we want to spend quality time together which makes it difficult to balance our need for help with our desires to spend as much time together as possible. The questions we have are are there any couples or single CF 's that are able to share a very delicate subject and their own experiences with "End of life" care? The other question is how do we determine what we need for help and how to ask for it. Up till now have been very self sufficient . We find this very difficult. If you would like to private message me perhaps we can learn something. <br><br>JenWren CF\ Diabetes, <br>Husband : Mine<br>
I have CF I'm getting up there in my age and in the "End Stage" of my disease. My husband and I were quite put off by those words written by the doctor. We know why they write this because of thee numbers and all the scientific gathers they find. But " End stages could go on for a long time.. The way they make it sound is that my days are numbered. If we didn't have a healthy perspective on this subject I might plunge into depression and perhaps get worse . What I am writing about is that my husband and I decided to look into the support provided by Hospice so that we could build relationships and My husband could have the support that he will so badly need when that process of getting more ill comes. We have now run into some very difficult questions about what to ask Hospice to do. The thing is at this point in our lives together we want to spend quality time together which makes it difficult to balance our need for help with our desires to spend as much time together as possible. The questions we have are are there any couples or single CF 's that are able to share a very delicate subject and their own experiences with "End of life" care? The other question is how do we determine what we need for help and how to ask for it. Up till now have been very self sufficient . We find this very difficult. If you would like to private message me perhaps we can learn something. <br><br>JenWren CF\ Diabetes, <br>Husband : Mine<br>
I am not sure if this helps. My daughter was end stage for over a year. Her complications really came after she had a baby and she made the choice willingly to carry and have her baby. Anyway I think Hopsice may vary state to state and maybe even county. We did have a visit with our local hospice and actually she was kinda of denied. Apparently where we are once you go under hospice they pay for all medications you need to maintain comfort, one of her meds was 1900.00 and we were told if they took her and paid for that they would have to do so for all patients that needed that med for comfort. They were supposed to call back but never did, my daughter kind of laughed. She already had a visiting nurse that came once a week and had a telehealth machine where 3 days a week nurse called. I could work from home or at hospital so her father brother and sister and I took care of her. She had told me her wishes and one was to have a bday party with her son as his 5th bday was coming up, when she went in hospital and was told nothing more could be done she told them they could start morphine after the party. So he dad ran around town getting bday cake she had previosuly bought her son a gift and friends and family all crowded into hospital even her doctor and staff came up. Her son wen with a cousin and rest of family freinds stayed by her side holding hand and I laid in bed with her holding her accross my lap. I know some hospice also come only maybe once a week to give family maybe an hour break . I suggest really looking at what they offer to make sure it matches your needs
I am not sure if this helps. My daughter was end stage for over a year. Her complications really came after she had a baby and she made the choice willingly to carry and have her baby. Anyway I think Hopsice may vary state to state and maybe even county. We did have a visit with our local hospice and actually she was kinda of denied. Apparently where we are once you go under hospice they pay for all medications you need to maintain comfort, one of her meds was 1900.00 and we were told if they took her and paid for that they would have to do so for all patients that needed that med for comfort. They were supposed to call back but never did, my daughter kind of laughed. She already had a visiting nurse that came once a week and had a telehealth machine where 3 days a week nurse called. I could work from home or at hospital so her father brother and sister and I took care of her. She had told me her wishes and one was to have a bday party with her son as his 5th bday was coming up, when she went in hospital and was told nothing more could be done she told them they could start morphine after the party. So he dad ran around town getting bday cake she had previosuly bought her son a gift and friends and family all crowded into hospital even her doctor and staff came up. Her son wen with a cousin and rest of family freinds stayed by her side holding hand and I laid in bed with her holding her accross my lap. I know some hospice also come only maybe once a week to give family maybe an hour break . I suggest really looking at what they offer to make sure it matches your needs
<BR>I am not sure if this helps. My daughter was end stage for over a year. Her complications really came after she had a baby and she made the choice willingly to carry and have her baby. Anyway I think Hopsice may vary state to state and maybe even county. We did have a visit with our local hospice and actually she was kinda of denied. Apparently where we are once you go under hospice they pay for all medications you need to maintain comfort, one of her meds was 1900.00 and we were told if they took her and paid for that they would have to do so for all patients that needed that med for comfort. They were supposed to call back but never did, my daughter kind of laughed. She already had a visiting nurse that came once a week and had a telehealth machine where 3 days a week nurse called. I could work from home or at hospital so her father brother and sister and I took care of her. She had told me her wishes and one was to have a bday party with her son as his 5th bday was coming up, when she went in hospital and was told nothing more could be done she told them they could start morphine after the party. So he dad ran around town getting bday cake she had previosuly bought her son a gift and friends and family all crowded into hospital even her doctor and staff came up. Her son wen with a cousin and rest of family freinds stayed by her side holding hand and I laid in bed with her holding her accross my lap. I know some hospice also come only maybe once a week to give family maybe an hour break . I suggest really looking at what they offer to make sure it matches your needs
musclemania70
New member
tammy--did your daughter get evaluated for transplant? just wondering.
musclemania70
New member
tammy--did your daughter get evaluated for transplant? just wondering.
musclemania70
New member
tammy--did your daughter get evaluated for transplant? just wondering.
we discussed transplant did a lot of research, she talked with doctors etc buut she could not keep weight on. It was her decision once we did all research she felt that she knew about how much time she had with her son andshe did not want to risk going for surgery and loosing time. She spent a good amount of time talking with her doctor and research and her decision based on all that was not to go for a transplant. Its hard to exp;lain .
we discussed transplant did a lot of research, she talked with doctors etc buut she could not keep weight on. It was her decision once we did all research she felt that she knew about how much time she had with her son andshe did not want to risk going for surgery and loosing time. She spent a good amount of time talking with her doctor and research and her decision based on all that was not to go for a transplant. Its hard to exp;lain.
<BR>we discussed transplant did a lot of research, she talked with doctors etc buut she could not keep weight on. It was her decision once we did all research she felt that she knew about how much time she had with her son andshe did not want to risk going for surgery and loosing time. She spent a good amount of time talking with her doctor and research and her decision based on all that was not to go for a transplant. Its hard to exp;lain.
JenWren, Thanks for sharing this. I hope you'll make a post or submit an article for a newsletter for this site. It sounds like it could be worth printing and placing with my 5 wishes form.
Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
JenWren, Thanks for sharing this. I hope you'll make a post or submit an article for a newsletter for this site. It sounds like it could be worth printing and placing with my 5 wishes form.
Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
JenWren, Thanks for sharing this. I hope you'll make a post or submit an article for a newsletter for this site. It sounds like it could be worth printing and placing with my 5 wishes form.
<br />
<br />Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
<br />
<br />Tammy, I think most of us understand completely. Your daughter had a lot going on in a quick amount of time. Most people faced with a rapid decline have a difficult time deciding about tranplant. I'm sure the doctors didn't paint an overly rosy picture either. Without stability pre-tx, tx recovery can be very difficult. It is for this reason I think transplant should be talked about much earlier. It is obviously not discussed until it is almost time to be evaluated given the number of people that talk about "the dreaded tx talk" ...and they are often beyond ready, numberically speaking to be evaluated.
T
TleighsHusband
Guest
My wife Tiffany passed away last December and this is one of those discussions that is very healthy yet difficult to have. I can now say that I am so thankful that I clearly knew what Tiffany wanted and did not want when it came to end of life issues. I think one major point is not to set expectations of what "will" happen. There are some things that are common but many go through different end of life issues. We chose not to go the hospice route more by choice and circumstance. We were in the process of getting the tx evaluation when she passed away. We were very independent with Tiff's CF care not in the sense that the Dr. were not involved but in that we did as much as we could at home without healthcare personnel coming in all the time. Her parents had also made the commitment that Mom would come and live with us if we ever needed it and we would take her up on it every now and then. When Tiffany passed away, we had just hit those last couple of months when someone needed to be with her more often and she was no longer able to do some of the basics of life like get her lunch while I was at work. If she had not gone into the hospital when she did then I would have been making that call to Mom to see if she could come for a couple months. We maximized our time together and rejoiced in the life that we had together. We deliberately worked at having those "purposeful" and "fun" times that I still smile about today and enjoy remembering my wife for all that she was and all that we had together. Feel free to PM me if you have specific questions.
T
TleighsHusband
Guest
My wife Tiffany passed away last December and this is one of those discussions that is very healthy yet difficult to have. I can now say that I am so thankful that I clearly knew what Tiffany wanted and did not want when it came to end of life issues. I think one major point is not to set expectations of what "will" happen. There are some things that are common but many go through different end of life issues. We chose not to go the hospice route more by choice and circumstance. We were in the process of getting the tx evaluation when she passed away. We were very independent with Tiff's CF care not in the sense that the Dr. were not involved but in that we did as much as we could at home without healthcare personnel coming in all the time. Her parents had also made the commitment that Mom would come and live with us if we ever needed it and we would take her up on it every now and then. When Tiffany passed away, we had just hit those last couple of months when someone needed to be with her more often and she was no longer able to do some of the basics of life like get her lunch while I was at work. If she had not gone into the hospital when she did then I would have been making that call to Mom to see if she could come for a couple months. We maximized our time together and rejoiced in the life that we had together. We deliberately worked at having those "purposeful" and "fun" times that I still smile about today and enjoy remembering my wife for all that she was and all that we had together. Feel free to PM me if you have specific questions.
T
TleighsHusband
Guest
My wife Tiffany passed away last December and this is one of those discussions that is very healthy yet difficult to have. I can now say that I am so thankful that I clearly knew what Tiffany wanted and did not want when it came to end of life issues. I think one major point is not to set expectations of what "will" happen. There are some things that are common but many go through different end of life issues. We chose not to go the hospice route more by choice and circumstance. We were in the process of getting the tx evaluation when she passed away. We were very independent with Tiff's CF care not in the sense that the Dr. were not involved but in that we did as much as we could at home without healthcare personnel coming in all the time. Her parents had also made the commitment that Mom would come and live with us if we ever needed it and we would take her up on it every now and then. When Tiffany passed away, we had just hit those last couple of months when someone needed to be with her more often and she was no longer able to do some of the basics of life like get her lunch while I was at work. If she had not gone into the hospital when she did then I would have been making that call to Mom to see if she could come for a couple months. We maximized our time together and rejoiced in the life that we had together. We deliberately worked at having those "purposeful" and "fun" times that I still smile about today and enjoy remembering my wife for all that she was and all that we had together. Feel free to PM me if you have specific questions.