Turning off "caregiver"

[TonyaH]

I don't know if this is more to vent, or to know I'm not alone. Andrew has been really sick since last Saturday. High fevers, headache, runny nose, achy lungs..and on Wednesday developed this huge rash all over his body. He was 3 weeks into ivs for a mycobacterium infections so we have been back and forth to our clinic every couple of days as they were trying to figure out if this was viral, an infection in the line, a drug reation etc.

Well, yesterday we were at UNC and a blood culture did come back positive for a line infection. Infectious disease looked at him and said to stop all meds, as they thought he was having a drug reaction. So, they pulled the line.

So here I sit,,,a house full of flushes, iv meds, tubing, etc.... and I feel completely useless. All I had to do was get him through October 29th. Then we could switch to oral and nebbed meds for the myco and be done with all of this. Now we have to wait to see what to do next once he is better. There is a possiblity they will have to place another picc for more ivs once he is well. But his myco is very resisitant and we had trouble finding the meds we were using in the first place.

And he has had this picc in since mid-July because we also used it for a pseudo infection he had this summer. This has been our life. I know I should be thrilled for him that he has at least a couple weeks of freedom, but I just feel sad. I don't know why. Instead of looking at this as a break for him and for me, I feel like I failed. I can't bring myself to put away all of these meds and supplies that I was using to get him better. I feel like I'm losing it a little bit. The minute I'm alone in a room without my husband or kids to see it, I start crying.

Has anyone else had trouble letting go of their caregiver responsibilties?

 

[TonyaH]

I don't know if this is more to vent, or to know I'm not alone. Andrew has been really sick since last Saturday. High fevers, headache, runny nose, achy lungs..and on Wednesday developed this huge rash all over his body. He was 3 weeks into ivs for a mycobacterium infections so we have been back and forth to our clinic every couple of days as they were trying to figure out if this was viral, an infection in the line, a drug reation etc.

Well, yesterday we were at UNC and a blood culture did come back positive for a line infection. Infectious disease looked at him and said to stop all meds, as they thought he was having a drug reaction. So, they pulled the line.

So here I sit,,,a house full of flushes, iv meds, tubing, etc.... and I feel completely useless. All I had to do was get him through October 29th. Then we could switch to oral and nebbed meds for the myco and be done with all of this. Now we have to wait to see what to do next once he is better. There is a possiblity they will have to place another picc for more ivs once he is well. But his myco is very resisitant and we had trouble finding the meds we were using in the first place.

And he has had this picc in since mid-July because we also used it for a pseudo infection he had this summer. This has been our life. I know I should be thrilled for him that he has at least a couple weeks of freedom, but I just feel sad. I don't know why. Instead of looking at this as a break for him and for me, I feel like I failed. I can't bring myself to put away all of these meds and supplies that I was using to get him better. I feel like I'm losing it a little bit. The minute I'm alone in a room without my husband or kids to see it, I start crying.

Has anyone else had trouble letting go of their caregiver responsibilties?

 

[TonyaH]

I don't know if this is more to vent, or to know I'm not alone. Andrew has been really sick since last Saturday. High fevers, headache, runny nose, achy lungs..and on Wednesday developed this huge rash all over his body. He was 3 weeks into ivs for a mycobacterium infections so we have been back and forth to our clinic every couple of days as they were trying to figure out if this was viral, an infection in the line, a drug reation etc.
<br />
<br />Well, yesterday we were at UNC and a blood culture did come back positive for a line infection. Infectious disease looked at him and said to stop all meds, as they thought he was having a drug reaction. So, they pulled the line.
<br />
<br />So here I sit,,,a house full of flushes, iv meds, tubing, etc.... and I feel completely useless. All I had to do was get him through October 29th. Then we could switch to oral and nebbed meds for the myco and be done with all of this. Now we have to wait to see what to do next once he is better. There is a possiblity they will have to place another picc for more ivs once he is well. But his myco is very resisitant and we had trouble finding the meds we were using in the first place.
<br />
<br />And he has had this picc in since mid-July because we also used it for a pseudo infection he had this summer. This has been our life. I know I should be thrilled for him that he has at least a couple weeks of freedom, but I just feel sad. I don't know why. Instead of looking at this as a break for him and for me, I feel like I failed. I can't bring myself to put away all of these meds and supplies that I was using to get him better. I feel like I'm losing it a little bit. The minute I'm alone in a room without my husband or kids to see it, I start crying.
<br />
<br />Has anyone else had trouble letting go of their caregiver responsibilties?

 

[Mommafirst]

Well we never stop being caregivers, but all of a sudden they pulled away all your tools...tools you were depending on to help him ... and now you are left with nothing but to wait. I can see how this would be emotionally overwhelming, because the thing that was getting you through was knowing you were doing everything to help him and now you feel that you can't help. ((((HUGS)))) I can't claim to have been in that situation, but I can say that I still feel I can understand. I can understand how I would feel.

YOu must be soooo frustrated. And while you know that this is a nice reprieve for Andrew, its going to start all over again soon enough. I hate CF, I'm so sorry its doing this to you.

Also, Tonya, its so easy when we are in active fight mode to neglect to take care of ourselves. Use this time reprieve to pamper yourself a little. Go for a walk or a run, have a massage, have lunch out with a friend, take a bath....whatever thing you do to make you feel like YOU.

(((HUGS)))

 

[Mommafirst]

Well we never stop being caregivers, but all of a sudden they pulled away all your tools...tools you were depending on to help him ... and now you are left with nothing but to wait. I can see how this would be emotionally overwhelming, because the thing that was getting you through was knowing you were doing everything to help him and now you feel that you can't help. ((((HUGS)))) I can't claim to have been in that situation, but I can say that I still feel I can understand. I can understand how I would feel.

YOu must be soooo frustrated. And while you know that this is a nice reprieve for Andrew, its going to start all over again soon enough. I hate CF, I'm so sorry its doing this to you.

Also, Tonya, its so easy when we are in active fight mode to neglect to take care of ourselves. Use this time reprieve to pamper yourself a little. Go for a walk or a run, have a massage, have lunch out with a friend, take a bath....whatever thing you do to make you feel like YOU.

(((HUGS)))

 

[Mommafirst]

Well we never stop being caregivers, but all of a sudden they pulled away all your tools...tools you were depending on to help him ... and now you are left with nothing but to wait. I can see how this would be emotionally overwhelming, because the thing that was getting you through was knowing you were doing everything to help him and now you feel that you can't help. ((((HUGS)))) I can't claim to have been in that situation, but I can say that I still feel I can understand. I can understand how I would feel.
<br />
<br />YOu must be soooo frustrated. And while you know that this is a nice reprieve for Andrew, its going to start all over again soon enough. I hate CF, I'm so sorry its doing this to you.
<br />
<br />Also, Tonya, its so easy when we are in active fight mode to neglect to take care of ourselves. Use this time reprieve to pamper yourself a little. Go for a walk or a run, have a massage, have lunch out with a friend, take a bath....whatever thing you do to make you feel like YOU.
<br />
<br />(((HUGS)))

 

[JORDYSMOM]

Tonya, that helpless feeling is awful for a Mom. Before, you had something to do, and now you are helpless to do anything but wait. It's completely understandable that you feel this way.

I go through this a lot with Jordan. Our situation is a bit different, as it's based on the fact that he's an "adult", and I can't make him do his treatments. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I feel helpless to keep his progression under control, and I see him progressing. He refuses to acknowledge it, so I cry a lot when I'm alone too.<img src="i/expressions/face-icon-small-sad.gif" border="0">

I'm sorry that Andrew is struggling so much, and that you are going through this. I hope that the answers come quickly, and you can feel more in control soon. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

Tonya, that helpless feeling is awful for a Mom. Before, you had something to do, and now you are helpless to do anything but wait. It's completely understandable that you feel this way.

I go through this a lot with Jordan. Our situation is a bit different, as it's based on the fact that he's an "adult", and I can't make him do his treatments. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I feel helpless to keep his progression under control, and I see him progressing. He refuses to acknowledge it, so I cry a lot when I'm alone too.<img src="i/expressions/face-icon-small-sad.gif" border="0">

I'm sorry that Andrew is struggling so much, and that you are going through this. I hope that the answers come quickly, and you can feel more in control soon. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

Tonya, that helpless feeling is awful for a Mom. Before, you had something to do, and now you are helpless to do anything but wait. It's completely understandable that you feel this way.
<br />
<br />I go through this a lot with Jordan. Our situation is a bit different, as it's based on the fact that he's an "adult", and I can't make him do his treatments. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I feel helpless to keep his progression under control, and I see him progressing. He refuses to acknowledge it, so I cry a lot when I'm alone too.<img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I'm sorry that Andrew is struggling so much, and that you are going through this. I hope that the answers come quickly, and you can feel more in control soon. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey
<br />
<br />
<br />

 

[SARAHSARAH253]

HUGS..HUGS...Read this early this morning, and didn't respond...Your family has been on mind ever since. I haven't been there yet.(No pic lines or IV's yet). So, I don't have any advise on that part.

Just wanted to send you BIG HUGS..HUGS...I'll say a prayer tonight for your family.

Love,

Sarah

Mommy to Johnny 3 w/cf...bailey almost a year no/cf...

 

[SARAHSARAH253]

HUGS..HUGS...Read this early this morning, and didn't respond...Your family has been on mind ever since. I haven't been there yet.(No pic lines or IV's yet). So, I don't have any advise on that part.

Just wanted to send you BIG HUGS..HUGS...I'll say a prayer tonight for your family.

Love,

Sarah

Mommy to Johnny 3 w/cf...bailey almost a year no/cf...

 

[SARAHSARAH253]

HUGS..HUGS...Read this early this morning, and didn't respond...Your family has been on mind ever since. I haven't been there yet.(No pic lines or IV's yet). So, I don't have any advise on that part.
<br />
<br />Just wanted to send you BIG HUGS..HUGS...I'll say a prayer tonight for your family.
<br />
<br />Love,
<br />
<br />Sarah
<br />
<br />Mommy to Johnny 3 w/cf...bailey almost a year no/cf...

 

[TonyaH]

Thanks guys,
And just for the record, it really doesn't matter if you've been through any of this or not, you are still a cf mom in the cf fight, and you all understand me. I appreciate your responses. I know tomorrow I'll wake up feeling less weepy. I don't have many days like this. Maybe I just needed one.

I'll look forward to posting a GOOD message when Andrew is doing better!

 

[TonyaH]

Thanks guys,
And just for the record, it really doesn't matter if you've been through any of this or not, you are still a cf mom in the cf fight, and you all understand me. I appreciate your responses. I know tomorrow I'll wake up feeling less weepy. I don't have many days like this. Maybe I just needed one.

I'll look forward to posting a GOOD message when Andrew is doing better!

 

[TonyaH]

Thanks guys,
<br />And just for the record, it really doesn't matter if you've been through any of this or not, you are still a cf mom in the cf fight, and you all understand me. I appreciate your responses. I know tomorrow I'll wake up feeling less weepy. I don't have many days like this. Maybe I just needed one.
<br />
<br />I'll look forward to posting a GOOD message when Andrew is doing better!
<br />
<br />

 

[JennifersHope]

I just wanted you to know that I was sorry for all the stress and helpless feelings that come with being a CF mom. I can't imagine how horrible that feels, I actually try not to think about it because it overwhelms me.

I hope you are not insulted but the only way I can relate is I love my dog so much, he is like a child to me, (granted a human child I could not imagine the kind of love I would feel for him) but anyway, I do love my dog so much. I bring him to daycare when I work and I even have hired babysitters to stay with him so he would be alone... One day he got a tick, just a tick, nothing major, well I am a Registered Nurse, trained in trauma, ER and emergencies. I freaked out so bad, that I drove him to the Pet emergency room in the middle of the night crying my eyes out to please fix my baby. Extremly insane of me, yes, people feel insane for the ones they love.

Now add a human child that you carried in your body, I can't imagine how that would feel, I always wanted to know what it was like to be a mom, but I know I could't handle it. I would just die on the inside if my child was ill and I couldn't fix them.

There isn't anything you can do that you haven't already done. You sound like an amazing mom, please don't blame yourself or feel responsible. CF sucks. CF isn't fair and it isn't a respector of persons. It doesn't care that you will do whatever you can.

I don't want to give you advice on what to do, I am not a mom, I just know what helps me with my stress in life, the things I can not control such as my health, my career, having to give that up, feeling helpless, for me having people remind me of the things that I do have control of, the things that are positive brings some relief.

I am sorry for your feelings, I hope you feel better soon

Hugs

 

[JennifersHope]

I just wanted you to know that I was sorry for all the stress and helpless feelings that come with being a CF mom. I can't imagine how horrible that feels, I actually try not to think about it because it overwhelms me.

I hope you are not insulted but the only way I can relate is I love my dog so much, he is like a child to me, (granted a human child I could not imagine the kind of love I would feel for him) but anyway, I do love my dog so much. I bring him to daycare when I work and I even have hired babysitters to stay with him so he would be alone... One day he got a tick, just a tick, nothing major, well I am a Registered Nurse, trained in trauma, ER and emergencies. I freaked out so bad, that I drove him to the Pet emergency room in the middle of the night crying my eyes out to please fix my baby. Extremly insane of me, yes, people feel insane for the ones they love.

Now add a human child that you carried in your body, I can't imagine how that would feel, I always wanted to know what it was like to be a mom, but I know I could't handle it. I would just die on the inside if my child was ill and I couldn't fix them.

There isn't anything you can do that you haven't already done. You sound like an amazing mom, please don't blame yourself or feel responsible. CF sucks. CF isn't fair and it isn't a respector of persons. It doesn't care that you will do whatever you can.

I don't want to give you advice on what to do, I am not a mom, I just know what helps me with my stress in life, the things I can not control such as my health, my career, having to give that up, feeling helpless, for me having people remind me of the things that I do have control of, the things that are positive brings some relief.

I am sorry for your feelings, I hope you feel better soon

Hugs

 

[JennifersHope]

I just wanted you to know that I was sorry for all the stress and helpless feelings that come with being a CF mom. I can't imagine how horrible that feels, I actually try not to think about it because it overwhelms me.
<br />
<br />I hope you are not insulted but the only way I can relate is I love my dog so much, he is like a child to me, (granted a human child I could not imagine the kind of love I would feel for him) but anyway, I do love my dog so much. I bring him to daycare when I work and I even have hired babysitters to stay with him so he would be alone... One day he got a tick, just a tick, nothing major, well I am a Registered Nurse, trained in trauma, ER and emergencies. I freaked out so bad, that I drove him to the Pet emergency room in the middle of the night crying my eyes out to please fix my baby. Extremly insane of me, yes, people feel insane for the ones they love.
<br />
<br />Now add a human child that you carried in your body, I can't imagine how that would feel, I always wanted to know what it was like to be a mom, but I know I could't handle it. I would just die on the inside if my child was ill and I couldn't fix them.
<br />
<br />There isn't anything you can do that you haven't already done. You sound like an amazing mom, please don't blame yourself or feel responsible. CF sucks. CF isn't fair and it isn't a respector of persons. It doesn't care that you will do whatever you can.
<br />
<br />I don't want to give you advice on what to do, I am not a mom, I just know what helps me with my stress in life, the things I can not control such as my health, my career, having to give that up, feeling helpless, for me having people remind me of the things that I do have control of, the things that are positive brings some relief.
<br />
<br />I am sorry for your feelings, I hope you feel better soon
<br />
<br />Hugs

 

[ashmomo]

I hope things are going better in the morning for you when you wake up! I am so sorry Andrew is going through this rough time. I hope he can get back on track soon.
I just wanted you to know that this CF stress is overwhelming and causes many of us moms to cry when we're alone <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF SUCK! {{{{{HUGS}}}}}

 

[ashmomo]

I hope things are going better in the morning for you when you wake up! I am so sorry Andrew is going through this rough time. I hope he can get back on track soon.
I just wanted you to know that this CF stress is overwhelming and causes many of us moms to cry when we're alone <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF SUCK! {{{{{HUGS}}}}}