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Copyright© 2007 All Rights Reserved
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Duke Lung Transplant Articles
(These opinions belong to the author only and are in no way intended to reflect or represent the thoughts of any person or persons on this website)
THE CAREGIVER'S PATHWAY, NO TURNING BACK
Written by: Donna L. Stone
March 2007
Some people have had the privilege of choosing their pathway in life. Yes, there may be some bumps, curves, mudslides and mountains. But when you are on the path you choose to try to be prepared ahead of time and can hopefully handle the circumstances. However, when a catastrophic circumstance comes into our lives unannounced we are never fully prepared.
In this article I will address non-professional caretakers. Those are people like you and me who didn't choose this role, we became a caretaker because we had no other choice, we love the one we care for and humanly speaking it is our duty to our loved ones.
You probably have already asked why the unusual title, because it is only one way. There is no turning back only running away if that is what you want to do. But most of all I will bring out how as caretakers we will at times feel so alone, that no one is there helping you or the person that is ill. There's no U-turns, roadside parks or beautiful scenery the majority of the time on this highway we call care giving. Only, (only) when we can see past all the suffering do we notice how gloriously wonderful it is when God gives our loved ones a second chance.
My husband became ill in the fall of 1999 and had a lung transplant on April 26, 2005. And what amazes me to this day is the way (I don't want to use the word ignorance) people believe everything is perfect now. I'm sure you have come across others who think they're cured now, they can go back to work, they can live a perfectly normal life, you can go back to your old life. Boy, aren't they mistaken (that's the word I want to use). Nothing is further from the truth. My favorite way to explain it now is to say "he hasn't been given a new life, only the path of his life has changed".
This article speaks to the wife, husband, child, mother, father, friend or partner of a loved one who has or is still suffering from a critical illness. I know one thing for certain; no one fully understands what a caretaker goes through except someone who has been there. Just as certain that we caretakers don't understand how our love ones suffer. Only the other transplant patients know; or for that matter, anyone that is going through any illness/disease.
Caregivers go through allot of emotions. Some we will admit to. Others we wouldn't because it makes us look selfish and in other people's eyes, horrible. When there are feelings that come across that make us look and feel as low as a snake, that's when we must try to remember we are having honest emotions to real circumstances. However, we must be honest to recognize why we are feeling emotions we do and no one understands because no one is walking in your shoes. That's why it is so important to keep in touch with fellow caregivers, join a caregivers group or speak to your pastor or another professional advisor. It is never good to store up emotions inside ourselves that will overwhelm us to the point we cannot take care of ourselves let alone our loved one.
If you are married, how many times have you recited your wedding vows in your mind over and over? ..in sickness and in health, till death us do part. It's like "Lord, do we really need that part in there"? Come on be honest with yourself. YOU ARE HUMAN. Sometimes you may want to run away. You're so tired. You wake up every morning thinking how long can I (caretaker) keep this up? Don't be so hard on yourself when these feelings oppress you. Remind yourself of your role and the precious promises you both made to each other. And to any of you special, wonderful caregivers that have not felt any of the emotions or stresses I have talked about, you are very blessed indeed. To each of you I tip my hat with the up most respect and admiration.
I'm trying not to exaggerate any of the things that I have brought out in this article, because let's face it our life will forever be changed when you live with a transplant patient. I'm not belittling any other disease or illness, I'm just stressing this never goes away. A transplant is not a cure. It's just a special privilege of living longer in a different way.
Living this different way leads us to have some thoughts that if people knew them, they would probably think allot less of us. That's when you take your shoes off and say "walk in them for awhile". Who can stand and judge us when they have no idea what we go through 24 hours a day?
Let's talk about some of the feelings we have. I warn you this is not a pleasant conversation. And let's be honest with ourselves, we have all thought them or most of them anyway, if not yet, we will. Again, remember these thoughts are brought on by the circumstances. None can judge anyone for any of the feelings they have or are having when you are a caregiver for a critically ill patient or recovering post-transplant patient. Allot of the feelings come from how we are reacting to what our loved one is doing or saying that hurts us. If they are having a really bad day, who do they take it out on? You, the one closest to them. But usually it is financial, physical, psychological, spiritual, etc. pressures that bring on our actions. Below is just a few of the many things we feel and are related to this new life we are living.
1. Afraid. (especially when you see the medicine box they give you at the hospital that is for just one week) !!
2. Exhaustion. (I don't think I need to say more)
3. Overwhelmed.
4. Incapable. (keeping the RXs straight, all the dr appointments, signs and symptoms to watch)
5. Frustration.
6. Temper. (strangely enough people who never had a temper before will develop one and the other person will respond in like manner)
7. Dislike for the other person. (this emotion is usually brought on when the stress of the situation is so overwhelming you begin to feel like you really do not like him or her at all because you both start acting in ways you never have) Again, reacting to circumstances.
8. Hate (I know this is a rather harsh word, but lets face it, the patient who is having a bad day, is in allot of pain, feeling frustrated, unloved, worthless or the caregiver is feeling sorry for themselves and they take this out on each other, if something is not fixed quickly then unfortunately it can turn to this emotion. IN NO WAY SHOULD WE CONDONE HARMING EACH OTHER BECAUSE OF THE UNFORTUNATE CHANGE OUR LIVES HAVE TAKEN. However, the great news is this can be overcome if we catch this emotion quickly and seek help.
9. Sexual frustration (when the patient is not able to perform nor has any desire to after recovery. Remember also some of the medicines can cause this problem. In return the caregiver who does not have these problems is locked in a world of sexless love. The patient has great guilt because they feel the problem is their fault. This situation must be addressed immediately also. If not, then there is a possibility infidelity can come into play. Please speak to your doctor about safe medications that can be taken to help with this situation when the time is right. Above all do not hold it against the ill partner.
10. Used. (we get them home, comfy them up in their favorite chair and you just want to sit down. Nooooooooooooooooooo way. Honey could you get me my slippers, oh and a can of Coke, and by the way do you know where the remote control is? This feeling usually does not cause a problem till much later when we're home and the patient is able to do more for themselves. This is about the time you want to throw old lines at them, such as, "do I look like your mother or are your legs broken?" May seem funny but YOU WILL get to the place that you will be used because the patient is feeling sorry for themselves or we babied them too much before.
These do not cover everything you will feel or every situation that you will come up against. But it's a head start to remind us of what some of us have already had to face. But mostly it's for the ones waiting to go through the transplant, post rehab and waiting to go home to face the starting of this new path that really have no idea what really lies ahead.
Let's not fool ourselves into thinking everything will be perfect from now on. But remember you are not alone. You will meet other transplant patients and their families. All we want you to know is that we want to be there for you and help you in any way we can. Remember the emotions mentioned and know that we other caretakers will try to help you with them and know we do walk in your shoes.
There will be more articles on subjects like these. Please feel free to contact me if you have a question or a disagreement with something I have said. Or if there is a subject you want us to look at please let us know.
God bless each and everyone of you and our solemn thoughts and prayers are with you.
Until next time.....may your path be brighter and a healthier one each day.
THE CAREGIVER'S PATHWAY, NO TURNING BACK
Written by: Donna L. Stone
March 2007
Some people have had the privilege of choosing their pathway in life. Yes, there may be some bumps, curves, mudslides and mountains. But when you are on the path you choose to try to be prepared ahead of time and can hopefully handle the circumstances. However, when a catastrophic circumstance comes into our lives unannounced we are never fully prepared.
In this article I will address non-professional caretakers. Those are people like you and me who didn't choose this role, we became a caretaker because we had no other choice, we love the one we care for and humanly speaking it is our duty to our loved ones.
You probably have already asked why the unusual title, because it is only one way. There is no turning back only running away if that is what you want to do. But most of all I will bring out how as caretakers we will at times feel so alone, that no one is there helping you or the person that is ill. There's no U-turns, roadside parks or beautiful scenery the majority of the time on this highway we call care giving. Only, (only) when we can see past all the suffering do we notice how gloriously wonderful it is when God gives our loved ones a second chance.
My husband became ill in the fall of 1999 and had a lung transplant on April 26, 2005. And what amazes me to this day is the way (I don't want to use the word ignorance) people believe everything is perfect now. I'm sure you have come across others who think they're cured now, they can go back to work, they can live a perfectly normal life, you can go back to your old life. Boy, aren't they mistaken (that's the word I want to use). Nothing is further from the truth. My favorite way to explain it now is to say "he hasn't been given a new life, only the path of his life has changed".
This article speaks to the wife, husband, child, mother, father, friend or partner of a loved one who has or is still suffering from a critical illness. I know one thing for certain; no one fully understands what a caretaker goes through except someone who has been there. Just as certain that we caretakers don't understand how our love ones suffer. Only the other transplant patients know; or for that matter, anyone that is going through any illness/disease.
Caregivers go through allot of emotions. Some we will admit to. Others we wouldn't because it makes us look selfish and in other people's eyes, horrible. When there are feelings that come across that make us look and feel as low as a snake, that's when we must try to remember we are having honest emotions to real circumstances. However, we must be honest to recognize why we are feeling emotions we do and no one understands because no one is walking in your shoes. That's why it is so important to keep in touch with fellow caregivers, join a caregivers group or speak to your pastor or another professional advisor. It is never good to store up emotions inside ourselves that will overwhelm us to the point we cannot take care of ourselves let alone our loved one.
If you are married, how many times have you recited your wedding vows in your mind over and over? ..in sickness and in health, till death us do part. It's like "Lord, do we really need that part in there"? Come on be honest with yourself. YOU ARE HUMAN. Sometimes you may want to run away. You're so tired. You wake up every morning thinking how long can I (caretaker) keep this up? Don't be so hard on yourself when these feelings oppress you. Remind yourself of your role and the precious promises you both made to each other. And to any of you special, wonderful caregivers that have not felt any of the emotions or stresses I have talked about, you are very blessed indeed. To each of you I tip my hat with the up most respect and admiration.
I'm trying not to exaggerate any of the things that I have brought out in this article, because let's face it our life will forever be changed when you live with a transplant patient. I'm not belittling any other disease or illness, I'm just stressing this never goes away. A transplant is not a cure. It's just a special privilege of living longer in a different way.
Living this different way leads us to have some thoughts that if people knew them, they would probably think allot less of us. That's when you take your shoes off and say "walk in them for awhile". Who can stand and judge us when they have no idea what we go through 24 hours a day?
Let's talk about some of the feelings we have. I warn you this is not a pleasant conversation. And let's be honest with ourselves, we have all thought them or most of them anyway, if not yet, we will. Again, remember these thoughts are brought on by the circumstances. None can judge anyone for any of the feelings they have or are having when you are a caregiver for a critically ill patient or recovering post-transplant patient. Allot of the feelings come from how we are reacting to what our loved one is doing or saying that hurts us. If they are having a really bad day, who do they take it out on? You, the one closest to them. But usually it is financial, physical, psychological, spiritual, etc. pressures that bring on our actions. Below is just a few of the many things we feel and are related to this new life we are living.
1. Afraid. (especially when you see the medicine box they give you at the hospital that is for just one week) !!
2. Exhaustion. (I don't think I need to say more)
3. Overwhelmed.
4. Incapable. (keeping the RXs straight, all the dr appointments, signs and symptoms to watch)
5. Frustration.
6. Temper. (strangely enough people who never had a temper before will develop one and the other person will respond in like manner)
7. Dislike for the other person. (this emotion is usually brought on when the stress of the situation is so overwhelming you begin to feel like you really do not like him or her at all because you both start acting in ways you never have) Again, reacting to circumstances.
8. Hate (I know this is a rather harsh word, but lets face it, the patient who is having a bad day, is in allot of pain, feeling frustrated, unloved, worthless or the caregiver is feeling sorry for themselves and they take this out on each other, if something is not fixed quickly then unfortunately it can turn to this emotion. IN NO WAY SHOULD WE CONDONE HARMING EACH OTHER BECAUSE OF THE UNFORTUNATE CHANGE OUR LIVES HAVE TAKEN. However, the great news is this can be overcome if we catch this emotion quickly and seek help.
9. Sexual frustration (when the patient is not able to perform nor has any desire to after recovery. Remember also some of the medicines can cause this problem. In return the caregiver who does not have these problems is locked in a world of sexless love. The patient has great guilt because they feel the problem is their fault. This situation must be addressed immediately also. If not, then there is a possibility infidelity can come into play. Please speak to your doctor about safe medications that can be taken to help with this situation when the time is right. Above all do not hold it against the ill partner.
10. Used. (we get them home, comfy them up in their favorite chair and you just want to sit down. Nooooooooooooooooooo way. Honey could you get me my slippers, oh and a can of Coke, and by the way do you know where the remote control is? This feeling usually does not cause a problem till much later when we're home and the patient is able to do more for themselves. This is about the time you want to throw old lines at them, such as, "do I look like your mother or are your legs broken?" May seem funny but YOU WILL get to the place that you will be used because the patient is feeling sorry for themselves or we babied them too much before.
These do not cover everything you will feel or every situation that you will come up against. But it's a head start to remind us of what some of us have already had to face. But mostly it's for the ones waiting to go through the transplant, post rehab and waiting to go home to face the starting of this new path that really have no idea what really lies ahead.
Let's not fool ourselves into thinking everything will be perfect from now on. But remember you are not alone. You will meet other transplant patients and their families. All we want you to know is that we want to be there for you and help you in any way we can. Remember the emotions mentioned and know that we other caretakers will try to help you with them and know we do walk in your shoes.
There will be more articles on subjects like these. Please feel free to contact me if you have a question or a disagreement with something I have said. Or if there is a subject you want us to look at please let us know.
God bless each and everyone of you and our solemn thoughts and prayers are with you.
Until next time.....may your path be brighter and a healthier one each day.