Need Input From Caregivers

[JennifersHope]

I am really on a mission and I need help from caregivers.... I have been really feeling like I need to find ways to help be a better "patient" to the ppl who love me and help take care of me

As a caregiver, can you tell me things you hate, things you appreciate, things that make you weary and things that encourage that your CFer does...?

I really want to hear honest answers, I like reading honest things of thoughts you have, like feeling guilty for wanting a break.. (something I just read) and also things that your CFer does that makes your life easier...

Thanks for all input......

Jennifer

 

[JennifersHope]

I am really on a mission and I need help from caregivers.... I have been really feeling like I need to find ways to help be a better "patient" to the ppl who love me and help take care of me

As a caregiver, can you tell me things you hate, things you appreciate, things that make you weary and things that encourage that your CFer does...?

I really want to hear honest answers, I like reading honest things of thoughts you have, like feeling guilty for wanting a break.. (something I just read) and also things that your CFer does that makes your life easier...

Thanks for all input......

Jennifer

 

[JennifersHope]

I am really on a mission and I need help from caregivers.... I have been really feeling like I need to find ways to help be a better "patient" to the ppl who love me and help take care of me

As a caregiver, can you tell me things you hate, things you appreciate, things that make you weary and things that encourage that your CFer does...?

I really want to hear honest answers, I like reading honest things of thoughts you have, like feeling guilty for wanting a break.. (something I just read) and also things that your CFer does that makes your life easier...

Thanks for all input......

Jennifer

 

[JennifersHope]

I am really on a mission and I need help from caregivers.... I have been really feeling like I need to find ways to help be a better "patient" to the ppl who love me and help take care of me

As a caregiver, can you tell me things you hate, things you appreciate, things that make you weary and things that encourage that your CFer does...?

I really want to hear honest answers, I like reading honest things of thoughts you have, like feeling guilty for wanting a break.. (something I just read) and also things that your CFer does that makes your life easier...

Thanks for all input......

Jennifer

 

[JennifersHope]

I am really on a mission and I need help from caregivers.... I have been really feeling like I need to find ways to help be a better "patient" to the ppl who love me and help take care of me

As a caregiver, can you tell me things you hate, things you appreciate, things that make you weary and things that encourage that your CFer does...?

I really want to hear honest answers, I like reading honest things of thoughts you have, like feeling guilty for wanting a break.. (something I just read) and also things that your CFer does that makes your life easier...

Thanks for all input......

Jennifer

 

[paysmom]

I never want a break i feel guilty when i do take a break and go out of town for a few days. what scares me is when my son wont do his treatments with out a fight because i dont now if when he goes out on his own if he will do them. we understand when you guys arent the best patients because we dont have to deal with what you do. just remember to sometimes give them a thanks. i love when my son gives me a hug and says thnks mom for taking care of me.

 

[paysmom]

I never want a break i feel guilty when i do take a break and go out of town for a few days. what scares me is when my son wont do his treatments with out a fight because i dont now if when he goes out on his own if he will do them. we understand when you guys arent the best patients because we dont have to deal with what you do. just remember to sometimes give them a thanks. i love when my son gives me a hug and says thnks mom for taking care of me.

 

[paysmom]

I never want a break i feel guilty when i do take a break and go out of town for a few days. what scares me is when my son wont do his treatments with out a fight because i dont now if when he goes out on his own if he will do them. we understand when you guys arent the best patients because we dont have to deal with what you do. just remember to sometimes give them a thanks. i love when my son gives me a hug and says thnks mom for taking care of me.

 

[paysmom]

I never want a break i feel guilty when i do take a break and go out of town for a few days. what scares me is when my son wont do his treatments with out a fight because i dont now if when he goes out on his own if he will do them. we understand when you guys arent the best patients because we dont have to deal with what you do. just remember to sometimes give them a thanks. i love when my son gives me a hug and says thnks mom for taking care of me.

 

[paysmom]

I never want a break i feel guilty when i do take a break and go out of town for a few days. what scares me is when my son wont do his treatments with out a fight because i dont now if when he goes out on his own if he will do them. we understand when you guys arent the best patients because we dont have to deal with what you do. just remember to sometimes give them a thanks. i love when my son gives me a hug and says thnks mom for taking care of me.

 

[LisaV]

What made me the craziest was when my husband "denied" something to the point he ended up back in the hospital - typically as an emergency run. Intellectually I understood how difficult it is to accept that the progression has brought one to a different place and needing new treatments or assistive equipment, but his "resistence" used to make things harder for me.

Once he was really ill it made me crazy when he sometimes wouldnt' agree to have other people as caregivers (not that he ever actually "refused" just that he'd keep complaining about and finding fault with anyone who wasn't me). Just because he couldn't do something and I could, didn't automatically mean that I had to be the person to do it - arranging for other folks to do stuff would have been a good option sometime.

What I liked most was when he told me his emotional truth and when he gave me the recognition that I was doing stuff and verbal appreciation

Also when he got real guilty for having an illness that made me crazy too. I never blamed him for his illness - but in an odd way he did sometimes.

It's hard to put into words.

 

[LisaV]

What made me the craziest was when my husband "denied" something to the point he ended up back in the hospital - typically as an emergency run. Intellectually I understood how difficult it is to accept that the progression has brought one to a different place and needing new treatments or assistive equipment, but his "resistence" used to make things harder for me.

Once he was really ill it made me crazy when he sometimes wouldnt' agree to have other people as caregivers (not that he ever actually "refused" just that he'd keep complaining about and finding fault with anyone who wasn't me). Just because he couldn't do something and I could, didn't automatically mean that I had to be the person to do it - arranging for other folks to do stuff would have been a good option sometime.

What I liked most was when he told me his emotional truth and when he gave me the recognition that I was doing stuff and verbal appreciation

Also when he got real guilty for having an illness that made me crazy too. I never blamed him for his illness - but in an odd way he did sometimes.

It's hard to put into words.

 

[LisaV]

What made me the craziest was when my husband "denied" something to the point he ended up back in the hospital - typically as an emergency run. Intellectually I understood how difficult it is to accept that the progression has brought one to a different place and needing new treatments or assistive equipment, but his "resistence" used to make things harder for me.

Once he was really ill it made me crazy when he sometimes wouldnt' agree to have other people as caregivers (not that he ever actually "refused" just that he'd keep complaining about and finding fault with anyone who wasn't me). Just because he couldn't do something and I could, didn't automatically mean that I had to be the person to do it - arranging for other folks to do stuff would have been a good option sometime.

What I liked most was when he told me his emotional truth and when he gave me the recognition that I was doing stuff and verbal appreciation

Also when he got real guilty for having an illness that made me crazy too. I never blamed him for his illness - but in an odd way he did sometimes.

It's hard to put into words.

 

[LisaV]

What made me the craziest was when my husband "denied" something to the point he ended up back in the hospital - typically as an emergency run. Intellectually I understood how difficult it is to accept that the progression has brought one to a different place and needing new treatments or assistive equipment, but his "resistence" used to make things harder for me.

Once he was really ill it made me crazy when he sometimes wouldnt' agree to have other people as caregivers (not that he ever actually "refused" just that he'd keep complaining about and finding fault with anyone who wasn't me). Just because he couldn't do something and I could, didn't automatically mean that I had to be the person to do it - arranging for other folks to do stuff would have been a good option sometime.

What I liked most was when he told me his emotional truth and when he gave me the recognition that I was doing stuff and verbal appreciation

Also when he got real guilty for having an illness that made me crazy too. I never blamed him for his illness - but in an odd way he did sometimes.

It's hard to put into words.

 

[LisaV]

What made me the craziest was when my husband "denied" something to the point he ended up back in the hospital - typically as an emergency run. Intellectually I understood how difficult it is to accept that the progression has brought one to a different place and needing new treatments or assistive equipment, but his "resistence" used to make things harder for me.

Once he was really ill it made me crazy when he sometimes wouldnt' agree to have other people as caregivers (not that he ever actually "refused" just that he'd keep complaining about and finding fault with anyone who wasn't me). Just because he couldn't do something and I could, didn't automatically mean that I had to be the person to do it - arranging for other folks to do stuff would have been a good option sometime.

What I liked most was when he told me his emotional truth and when he gave me the recognition that I was doing stuff and verbal appreciation

Also when he got real guilty for having an illness that made me crazy too. I never blamed him for his illness - but in an odd way he did sometimes.

It's hard to put into words.

 

[LisaV]

There's an item called "The Caregiver's Bill of Rights" that's been floating around for years - not sure who wrote it down to begin with. It is a great help when both the ill/disabled person and their caregivers buy into it.
------------------
A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 

[LisaV]

There's an item called "The Caregiver's Bill of Rights" that's been floating around for years - not sure who wrote it down to begin with. It is a great help when both the ill/disabled person and their caregivers buy into it.
------------------
A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 

[LisaV]

There's an item called "The Caregiver's Bill of Rights" that's been floating around for years - not sure who wrote it down to begin with. It is a great help when both the ill/disabled person and their caregivers buy into it.
------------------
A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 

[LisaV]

There's an item called "The Caregiver's Bill of Rights" that's been floating around for years - not sure who wrote it down to begin with. It is a great help when both the ill/disabled person and their caregivers buy into it.
------------------
A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 

[LisaV]

There's an item called "The Caregiver's Bill of Rights" that's been floating around for years - not sure who wrote it down to begin with. It is a great help when both the ill/disabled person and their caregivers buy into it.
------------------
A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.