Re: Patients vs Caregivers

[Guest guest]

Steve & Peggy,

I must have missed something when I signed up with Breathe Support @Yahoo groups,

I went back and checked my welcome notice and acceptance to the site and I didn't see anything written in black and white describing what Steve just said. Now if there is something I should have clicked on to read that please let me know and I will humbly, stand corrected. But I joined the site to find out everything that I could about IPF and to be point blank with everyone, I don't care where the info comes from, a patient, a caregiver, a doctor, a friend, a neighbor, and yes when the time comes I might even go to a fortune teller, an astrologist,and even a plumber if he can help!!!!!

When I married my wife (1966) we both said, "for better or worse and in sickness or health, til death do us part." I don't know what that means to some people---but to me, and thank God, my wife, it means we will do what it takes---we are one!!!!!!!!!!!

Maybe we are sick, as we see it---but I saw my father-in-law die with cancer 4 years ago and my wife WOULD NOT let her father go to a rest home---she litterly bathed, fed, clothed, cleaned him and yes wiped his butt for him after disposing of his waste. Now these are some of the things a caregiver may or may not do for us---I hope and pray my wife loves me as much as her father!!! So for ME to tell my wife, "to get in the back seat" on this site, probably isn't going to happen. With that said, I would like this board to seek to change the rules if they need to be changed, to include the caregivers and if not---maybe someone could direct me to a site that is a little more liberal.

G. UIP'IPF 5/07 Az.

When we were all welcomed to this support group it is clearly the intent to have two groups. One for patients and one for caregivers. The welcome e-mail also is very clear in how to join the caregivers group. So there is no question of guilt and or/living in the dark without information. This is in black and white with no question of interpretation. The one area it is also clear in is treating people in the group with respect. Calling people un Christian or using terms like abomination doesn't help.

Now that everyone knows I am quite a black and white thinking guy who expects to get what is advertised, I do believe in limited exceptions. Caregivers can monitor this group. Caregivers can give news of patients. Children, neighbors , friends etc would fall under this exception. Caregivers should not take it upon themselves to be main welcome committee for the patients group. Caregivers and patients should not give out medical advice. Patients can best relate how certain medications, procedures have affected them. Caregivers should not feel they need to respond to every message.

I have been in this support group only since March but feel these issues were resolved during the formation. Also this support group has been an enormous help to me both physically and mentally. Sincerely.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

[Guest guest]

, At the bottom of every e-mail message is a click on for Visit Your Group. Click on this to view mission statement. I believe I've also saved my welcome email which states the same. I can forward if you need.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support CC: l_kennelly@...Subject: Re: Patients vs CaregiversDate: Fri, 6 Jun 2008 01:59:25 -0700 (PDT)

Steve & Peggy,

I must have missed something when I signed up with Breathe Support @Yahoo groups,

I went back and checked my welcome notice and acceptance to the site and I didn't see anything written in black and white describing what Steve just said. Now if there is something I should have clicked on to read that please let me know and I will humbly, stand corrected. But I joined the site to find out everything that I could about IPF and to be point blank with everyone, I don't care where the info comes from, a patient, a caregiver, a doctor, a friend, a neighbor, and yes when the time comes I might even go to a fortune teller, an astrologist,and even a plumber if he can help!!!!!

When I married my wife (1966) we both said, "for better or worse and in sickness or health, til death do us part." I don't know what that means to some people---but to me, and thank God, my wife, it means we will do what it takes---we are one!!!!!!!!!!!

Maybe we are sick, as we see it---but I saw my father-in-law die with cancer 4 years ago and my wife WOULD NOT let her father go to a rest home---she litterly bathed, fed, clothed, cleaned him and yes wiped his butt for him after disposing of his waste. Now these are some of the things a caregiver may or may not do for us---I hope and pray my wife loves me as much as her father!!! So for ME to tell my wife, "to get in the back seat" on this site, probably isn't going to happen. With that said, I would like this board to seek to change the rules if they need to be changed, to include the caregivers and if not---maybe someone could direct me to a site that is a little more liberal.

G. UIP'IPF 5/07 Az.

When we were all welcomed to this support group it is clearly the intent to have two groups. One for patients and one for caregivers. The welcome e-mail also is very clear in how to join the caregivers group. So there is no question of guilt and or/living in the dark without information. This is in black and white with no question of interpretation. The one area it is also clear in is treating people in the group with respect. Calling people un Christian or using terms like abomination doesn't help.

Now that everyone knows I am quite a black and white thinking guy who expects to get what is advertised, I do believe in limited exceptions. Caregivers can monitor this group. Caregivers can give news of patients. Children, neighbors , friends etc would fall under this exception. Caregivers should not take it upon themselves to be main welcome committee for the patients group. Caregivers and patients should not give out medical advice. Patients can best relate how certain medications, procedures have affected them. Caregivers should not feel they need to respond to every message.

I have been in this support group only since March but feel these issues were resolved during the formation. Also this support group has been an enormous help to me both physically and mentally. Sincerely.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

[Guest guest]

Patients vs Caregivers

There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation.

Each group has their own set of feelings, fears frustrations, etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa.

Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well.

Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board.

In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them.

I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other "stuff" to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others.

But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here?

Leanne

Owner - Breathe Support Groups

[Guest guest]

Amen, Leanne.

Jac79/UIP - IPF 06/05

Patients vs Caregivers

There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation.

Each group has their own set of feelings, fears frustrations, etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa.

Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well.

Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board.

In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them.

I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other "stuff" to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others.

But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here?

Leanne

Owner - Breathe Support Groups

[Guest guest]

Leanne... will you please clear up one thing?

You say the consensus is to allow CG...yet you say you do not want to merge the boards. Will you clarify what the decision is please? One board or two and if it's two, will you clarify that as well?

Thanks!

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

Patients vs Caregivers

There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation.

Each group has their own set of feelings, fears frustrations, etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa.

Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well.

Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board.

In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them.

I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other "stuff" to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others.

But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here?

Leanne

Owner - Breathe Support Groups

[Guest guest]

I agree, well said the caregivers would not want patients on their board as it is a place for them to vent etc. I am sure they would not want a patient to read some of their thoughts.

Subject: Re: Patients vs CaregiversTo: Breathe-Support Date: Friday, June 6, 2008, 5:23 PM

Leanne... will you please clear up one thing?

You say the consensus is to allow CG...yet you say you do not want to merge the boards. Will you clarify what the decision is please? One board or two and if it's two, will you clarify that as well?

Thanks!

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

Patients vs Caregivers

There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation.

Each group has their own set of feelings, fears frustrations, etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa.

Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well.

Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board.

In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them.

I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other "stuff" to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others.

But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here?

Leanne

Owner - Breathe Support Groups