As much as I sit here and try to tell the world that I'm getting better....I'm just not. I was told over the weekend things will get better "when I make them better." I must admit, I didn't take that comment well and in fact I shut down a lot. I don't know how to make them better - don't they think if I knew that I would?!? I am miserable right now. I'm unhappy about the kids being in school but, I send them anyway and put on my happy face about it, hoping eventually I will find it isn't so bad and I don't have to fake the enthusiasm. I put on the happy face at work and tell people it is getting better when the truth is right now I absolutely hate my job because I feel I'm stuck in it alone. Yet, I get told it will always be this way so why should I or do I expect more? Yes, non-profit means not for profit but, you should still have multiple people worrying about the balance in the account when you have staff and not just 1 person...the staff! I try not to think about Mom. I try to focus my attention elsewhere and maybe that is what is holding me in this place, this deep dark place that I can't seem to flee no matter how hard I try.
Everyone has all the answers - leave your job, don't leave your job, cry, don't cry, fall apart, be strong for the kids. Everyone but me that is. I have no answers to give to anyone.
I have so much bottled up that I know one day it is going to explode and I don't know what will be left standing around me...that is a scary prospect. So for now, I just keep going through the motions and putting one foot in front of the other.
xoxo
Pandora
Monday, August 31, 2009
Wednesday, August 26, 2009
The Journey Home
It's 2 am and the phone rings. "Pandora, I'm Nurse Smith from the ICU. Your mom is asking for you. Her heart rate has gone up and she is refusing to take her medicine. We've transferred her back to the ICU and she is insisting on seeing you and saying you know what to do." "Yes, I do, I'm on my way. Tell her I will be there as quick as I can." That's how it began...my journey to help my mom find her peace and begin her journey home. I find myself going back to that moment often in the last few weeks. She said I'd know what to do. In that moment, I knew what to do. I knew my mom was asking me to help her come home to die and in that moment, something in me kicked in and I'm not sure it has shut off yet. I'm not sure if it will ever shut off.
I arrived at the hospital that night and imagine my surprise when I found my mom restrained with a tube down her nose and finding out they had forced her against her will to take the medication. Keep in mind, Mom had done all the "right" things. She had an advanced medical directive (AMD)/living will and she had appointed a medical power of attorney (MPOA), me. She had told them she didn't want the medication and to call me because I knew what she wanted and in fact, I did. She was saying she'd had enough. So, even though all this documentation was on file, she was forced to take medication to prevent her heart from going in to cardiac arrest and ending her life. I was stunned and heartbroken because I knew she was pleading in her own way to make all the pain, frustration and hurt she had felt in the last year from the cancer and the vasculitis go away.
I met with the ICU team and conveyed to them that Mom had asked them to stop treatment and as her POA, I was making those wishes known again. They kindly responded they understood and would share her wishes with the rest of her care team. A few hours later, in walks her surgical team and imagine my surprise when the chief surgical resident told me that there was no reason to make my mom DNR and to stop her treatment because she would be just fine from the surgery and he didn't understand why I was being so obtuse about things. Hold the phone! I am not your average bear, I know my way around a medical case or two. So, I politely told him I realized she would eventually heal from the surgery however, in the meantime, the vasculitis also now formally diagnosed as Wegner's Granuloma was going untreated and would go in to a full flare and kill her and she just didn't want to undergo more treatment that was often painful and made her sick to end up dying anyway, she just wanted to go home and be with her pets and family. So, off the surgical team went in a major huff but, I stood my ground.
Next came the cardiologist, who again was indignant that we were asking to transition her to hospice and take her home. Yes, she went in to a-fib but, when she wasn't refusing to take her medication, they had it somewhat controlled with medication. Just because it was up to 8 pills in a day to control it didn't mean she couldn't live a happy life. What he didn't take in to account was that it had been 50+ days since she had been able to be weight bearing and out of a hospital bed and when she did her heart raced so much they had to adjust those same meds. I tried again to express my mom's concerns and wishes. She is a 75 year old woman who doesn't want to endure more chemotherapy, more high dose steroids, more days of 30-50 pills a day just to make her systems try to work. She just wanted to go home and be with her family and pets. If it was just the a-fib then she would be willing to keep fighting but, it wasn't just the a-fib. It was the Wegner's, the multiple simultaneous infections, the colostomy, the bowel resection - not once but twice. They were just looking at her as a cardiac case and not the whole person. Again, they left me befuddled and annoyed.
Now, it is the "big guns", her kidney team. So again, within a matter of a few hours, I was having to convey my mom's expressed wishes to another team of physicians. At least this one was a little more understanding. He went in and talked to mom who at the time was confused and telling him people were trying to poison her. Did I mention anywhere that she was having long bouts of incoherency and confusion? Which made all of her pre-planning efforts all the more important. The doctor pulled me out of the room to tell me that he didn't think my mom was in a position to make those kinds of decisions right now. I politely reminded him that I had her AMD and her MPOA and that I was not confused and was very lucid and I was trying to carry out my Mom's wishes. In came the psychiatrist, Dr. Miller and with him came a sheer hell that I am not sure I will ever be past. Please note - he is the only doctor I will mention by name because he is one I will never forget. Dr. Miller informed me that my mom was depressed and not thinking clearly. Really?? I hadn't noticed that when she told me we were on a trip to Savannah that day. Okay, sarcasm aside, I knew that going in to all this. In fact, back months before, on another hospital stay, I told the doctors she needed help for depression and they dismissed me. They sent her to a geriatric specialist instead. So, this doctor who had just come on to my mom's case was telling me that he had all the answers and my mom didn't really know what she wanted. After some heated discussion, we all agreed that we needed a "case meeting"....a discussion that would bring all the doctors together who were treating mom and try to get them to stop looking at just their aspect of her case but the patient and quality of her life as a whole.
By this time, I was already emotionally and physically exhausted. I was having to argue that they needed to stop treatment on my mom and let her go home...to die. That is a huge decision for anyone and a huge burden and these "professionals" were not making this any easier. And sadly, it was only 11 AM on that same Thursday.
A short time later, Dr. Miller came to talk to myself and my sister. He had consulted with all of the physicians on her team and they were all in consensus that no 1 thing in her condition was serious enough to end her life and make her a candidate for hospice care. They didn't include the family on the case meeting. In fact, I'm not even sure it really ever happened or if Dr. Miller thought I would just back down. Guess he found out rather quickly that it takes a lot to make me back down and in fact he probably made me dig in my heels even harder.
I wasn't sure what to do but, fortunately, I work in the medical field and have friends who I trust to advise me so I called one. I spoke with her for some length of time and explained the situation. She advised me on my rights and told me I needed to ask for an ethics committee to be convened. So, I went to the nurses station and asked for that very thing to happen. In the meantime, they decided mom was stable and were moving her back to the 7th floor where we had been staying off and on now for about 7 weeks. So again, I asked the nursing staff on the 7th floor to assist me in convening an ethics committee. The nursing staff on that floor overall was fabulous. They knew Mom was tired and had had enough of the poking, prodding and endless medications. They were very supportive of trying to help us get her home. They sent in the ethics request.
Let's move forward to Thursday about 3PM. By this time, the surgeons had heard about the ethics committee and they joined us in Mom's room. The chief surgery resident felt the need to tear in to me, to the point the nursing staff all came in to see what was going on. He didn't understand why "we" had consented to the surgery if we were just going to take her home and put her on hospice care. I tried to explain to him that "we" didn't consent. They had asked just Mom to consent and they didn't explain to her in her often confused state that by doing the surgery (although it was medically necessary) that it would prevent her from getting treatment for the kidney disease. They were also telling me she isn't competent to make a decision regarding hospice yet, they had her sign a legal release form? After about 10 minutes of him telling me I don't have my Mom's best interest at heart, I snapped back and told him he didn't have to go home and tell my kids ages 14, 12, and 10 that grandma was going home to die so he didn't have the right to assume I came to this decision lightly or that it was an easy one. I was simply trying to do what my mom asked me to do in November, when she was first diagnosed with the renal cell carcinoma, I was trying to ensure she could die with her dignity and surrounded by people and things she loved. I stepped away for a short time and the surgeon who had performed the surgery came in to tell the family he thought we would see a big change in mom if we gave her just 24 more hours to clear her head. After discussion with my siblings, we decided to wait for a miracle and give mom the 24 hours they thought she needed. It was a long and restless night for everyone involved.
The next morning, enter Dr. Miller again. Did I mention I really don't like him? Dr. Miller had a conversation with my mom where when asked if she wanted to die, she said "no". She also told him I was on my way to take her shopping that day. She had been bedridden and unable to walk for some time but, I was coming to get her to go to the Riverwalk to go shopping. He told her she needed to stay in the hospital for a while longer to get better. After his conversation with Mom, he proceeded to tell my sister that my services as the POA were no longer needed as mom was able to express her wishes and was cognizant of things going on around her. She just had major surgery and is planning a shopping trip but she is competent?!? I joined the family at the hospital and requested a conference with Dr. Miller. We started a discussion in the hallway where Dr. Miller proceeded to tell me that legally, I had no right to intervene on my mother's behalf because she didn't want to die. I told Dr. Miller that he can't have it both ways. When she is saying she wants to go home and go on hospice care, she isn't competent and shouldn't be making decisions but when she doesn't want to "die" she is capable of making those decisions. Ummm excuse me?!? When asked - do you want to die- I think everyone would probably say no. If she had said yes, would they have called her suicidal and put her in restraints again?? We went on over and over covering the same points, neither wanting to give an inch. In walked her primary nephrologist and I swear I saw a halo over that man's head. I was in the process of telling Dr. Miller that when I got there my mom was irritated with me for taking so long to come in that day because we were supposed to go shopping for a Mercedes and I was late per usual. Hold on to your seats for this one. He then told me she wasn't in a position to be making life changing decisions like buying/selling cars or mutual funds. What?!? She can't buy or sell a car because it is a life changing decision but, she can choose to seek medical care or not because that isn't life changing?!? Isn't wanting to go home to die with some dignity the ultimate life changing decision? Am I missing the forest for the trees? I had expressed several times that even before this latest medical crisis, mom had expressed a great deal of doubt and hesitancy to continue her treatment and in fact the day she was hospitalized, she had told the angel nephrologist that same thing. But, apparently coming from me, that meant nothing. The nephrologist stepped in and informed Dr. Miller that my mom's Wegner's disease was terminal and that mom had expressed a great deal of hesitancy about continuation of her treatment with him as well. Dr. Miller was finally in a position where there wasn't much else left to say but that he would testify to his concerns at the ethics committee. Dr. C, the nephrologist joined us in Mom's room and had a nice talk with mom where he explained to her that she wasn't going to get better and she told him yet again, she just wanted to go home. Dr. C told her he would tell the ethics committee his view on her case having been her primary care physician and he wished her the best of luck on her journey. Dr. C is a man, like Dr. Miller, that I will never forget but for a totally different reason. He listened to a woman and her family and he walked us through what was a very difficult decision. Even knowing we wanted to take her home, we didn't know what meds to keep her on to make her comfortable and he helped navigate that maze with us to do what was best for her which was our ultimate goal anyway.
Friday afternoon, I had to testify to 1 man who held my mom's future in his hands. He was the "ethics committee". I had to again recount the events of the last year, the last few months, the last few days to one other person who didn't have a stake in the fight one way or another and he had the ultimate power to decide if I could fulfill my promise to my mother. After hearing my testimony, after talking to Dr. C, Dr. Miller and even my mom - who during her testimony was clear as a bell and able to relay to him she knew her kidney disease was killing her and she didn't see why there was such a fuss about her going home, a decision was made to allow her to leave the hospital on hospice and to being her journey home. Unfortunately, we lost quality time with mom during this process because it took 3 days after that to finally get her to her house. It was a rollercoaster that had far more downs than ups. Saturday, mom had a good day. She was awake and clear. I had a heart to heart with Mom that day. I asked her again if this is what she truly wanted. Looking me in the eye, my mom told me that it was exactly what she wanted - to just go home even knowing that meant she would soon die. In the clearest of voices and thought, my mom told me she knew this was a hard choice and journey and that she knew I would be the one who could see it through, that's why she had asked me to in November. In that moment, I was given the peace from her that I needed. I had done what she had asked. I had fought the hard fight and we were going home. I never really saw my mom again after that conversation. The days after that were filled with confusion and pain...sometimes even disdain and anger for those she loved. I will hold on to that moment and know in my heart that no matter what I was told along the way or since, I did what my mom asked of me and she knew I loved her.
Someone needs to hear about her journey, our journey. What we went through needs to be shared with other people so they know what to do in the same situation we were faced with. Surely, the pain, agony and frustration we went through to get her to where she wanted and needed to be wasn't for nothing. I am baffled and confused about our country and our views on the right to die issue. So many of us look at our animal population as just property. Yet, in their most desperate times of need, pain and suffering, we choose to do right by them and assist them in their transition and ease their pain. Yet, we don't have an option to do this for what we should care about the most - our fellow man, our loved ones, our family, our parents, our children, our friends. We don't have a way to ease their painful last days and help them in their transition because of some belief system that calls it is a sanctity of life issue. I invite anyone who doesn't feel we should assist them in their transition to take a journey with a loved one and watch them suffer through the pain, the confusion and the frustration and tell me they feel the same way after. I invite them to hold the hand of a loved one gasping for air as they drown with their lungs filling with their own bodily fluids. I invite them to see their bodies ravaged by infection and know the drugs they are getting for the pain aren't really controlling it. As painful as this was to write, I hope someone out there gains some insight from it and it provides them some guidance as they are faced with these same issues with their family, loved ones, or friends.
At long last, the journey for mom is over....but I feel my journey to see this doesn't happen to someone else has just begun.
I arrived at the hospital that night and imagine my surprise when I found my mom restrained with a tube down her nose and finding out they had forced her against her will to take the medication. Keep in mind, Mom had done all the "right" things. She had an advanced medical directive (AMD)/living will and she had appointed a medical power of attorney (MPOA), me. She had told them she didn't want the medication and to call me because I knew what she wanted and in fact, I did. She was saying she'd had enough. So, even though all this documentation was on file, she was forced to take medication to prevent her heart from going in to cardiac arrest and ending her life. I was stunned and heartbroken because I knew she was pleading in her own way to make all the pain, frustration and hurt she had felt in the last year from the cancer and the vasculitis go away.
I met with the ICU team and conveyed to them that Mom had asked them to stop treatment and as her POA, I was making those wishes known again. They kindly responded they understood and would share her wishes with the rest of her care team. A few hours later, in walks her surgical team and imagine my surprise when the chief surgical resident told me that there was no reason to make my mom DNR and to stop her treatment because she would be just fine from the surgery and he didn't understand why I was being so obtuse about things. Hold the phone! I am not your average bear, I know my way around a medical case or two. So, I politely told him I realized she would eventually heal from the surgery however, in the meantime, the vasculitis also now formally diagnosed as Wegner's Granuloma was going untreated and would go in to a full flare and kill her and she just didn't want to undergo more treatment that was often painful and made her sick to end up dying anyway, she just wanted to go home and be with her pets and family. So, off the surgical team went in a major huff but, I stood my ground.
Next came the cardiologist, who again was indignant that we were asking to transition her to hospice and take her home. Yes, she went in to a-fib but, when she wasn't refusing to take her medication, they had it somewhat controlled with medication. Just because it was up to 8 pills in a day to control it didn't mean she couldn't live a happy life. What he didn't take in to account was that it had been 50+ days since she had been able to be weight bearing and out of a hospital bed and when she did her heart raced so much they had to adjust those same meds. I tried again to express my mom's concerns and wishes. She is a 75 year old woman who doesn't want to endure more chemotherapy, more high dose steroids, more days of 30-50 pills a day just to make her systems try to work. She just wanted to go home and be with her family and pets. If it was just the a-fib then she would be willing to keep fighting but, it wasn't just the a-fib. It was the Wegner's, the multiple simultaneous infections, the colostomy, the bowel resection - not once but twice. They were just looking at her as a cardiac case and not the whole person. Again, they left me befuddled and annoyed.
Now, it is the "big guns", her kidney team. So again, within a matter of a few hours, I was having to convey my mom's expressed wishes to another team of physicians. At least this one was a little more understanding. He went in and talked to mom who at the time was confused and telling him people were trying to poison her. Did I mention anywhere that she was having long bouts of incoherency and confusion? Which made all of her pre-planning efforts all the more important. The doctor pulled me out of the room to tell me that he didn't think my mom was in a position to make those kinds of decisions right now. I politely reminded him that I had her AMD and her MPOA and that I was not confused and was very lucid and I was trying to carry out my Mom's wishes. In came the psychiatrist, Dr. Miller and with him came a sheer hell that I am not sure I will ever be past. Please note - he is the only doctor I will mention by name because he is one I will never forget. Dr. Miller informed me that my mom was depressed and not thinking clearly. Really?? I hadn't noticed that when she told me we were on a trip to Savannah that day. Okay, sarcasm aside, I knew that going in to all this. In fact, back months before, on another hospital stay, I told the doctors she needed help for depression and they dismissed me. They sent her to a geriatric specialist instead. So, this doctor who had just come on to my mom's case was telling me that he had all the answers and my mom didn't really know what she wanted. After some heated discussion, we all agreed that we needed a "case meeting"....a discussion that would bring all the doctors together who were treating mom and try to get them to stop looking at just their aspect of her case but the patient and quality of her life as a whole.
By this time, I was already emotionally and physically exhausted. I was having to argue that they needed to stop treatment on my mom and let her go home...to die. That is a huge decision for anyone and a huge burden and these "professionals" were not making this any easier. And sadly, it was only 11 AM on that same Thursday.
A short time later, Dr. Miller came to talk to myself and my sister. He had consulted with all of the physicians on her team and they were all in consensus that no 1 thing in her condition was serious enough to end her life and make her a candidate for hospice care. They didn't include the family on the case meeting. In fact, I'm not even sure it really ever happened or if Dr. Miller thought I would just back down. Guess he found out rather quickly that it takes a lot to make me back down and in fact he probably made me dig in my heels even harder.
I wasn't sure what to do but, fortunately, I work in the medical field and have friends who I trust to advise me so I called one. I spoke with her for some length of time and explained the situation. She advised me on my rights and told me I needed to ask for an ethics committee to be convened. So, I went to the nurses station and asked for that very thing to happen. In the meantime, they decided mom was stable and were moving her back to the 7th floor where we had been staying off and on now for about 7 weeks. So again, I asked the nursing staff on the 7th floor to assist me in convening an ethics committee. The nursing staff on that floor overall was fabulous. They knew Mom was tired and had had enough of the poking, prodding and endless medications. They were very supportive of trying to help us get her home. They sent in the ethics request.
Let's move forward to Thursday about 3PM. By this time, the surgeons had heard about the ethics committee and they joined us in Mom's room. The chief surgery resident felt the need to tear in to me, to the point the nursing staff all came in to see what was going on. He didn't understand why "we" had consented to the surgery if we were just going to take her home and put her on hospice care. I tried to explain to him that "we" didn't consent. They had asked just Mom to consent and they didn't explain to her in her often confused state that by doing the surgery (although it was medically necessary) that it would prevent her from getting treatment for the kidney disease. They were also telling me she isn't competent to make a decision regarding hospice yet, they had her sign a legal release form? After about 10 minutes of him telling me I don't have my Mom's best interest at heart, I snapped back and told him he didn't have to go home and tell my kids ages 14, 12, and 10 that grandma was going home to die so he didn't have the right to assume I came to this decision lightly or that it was an easy one. I was simply trying to do what my mom asked me to do in November, when she was first diagnosed with the renal cell carcinoma, I was trying to ensure she could die with her dignity and surrounded by people and things she loved. I stepped away for a short time and the surgeon who had performed the surgery came in to tell the family he thought we would see a big change in mom if we gave her just 24 more hours to clear her head. After discussion with my siblings, we decided to wait for a miracle and give mom the 24 hours they thought she needed. It was a long and restless night for everyone involved.
The next morning, enter Dr. Miller again. Did I mention I really don't like him? Dr. Miller had a conversation with my mom where when asked if she wanted to die, she said "no". She also told him I was on my way to take her shopping that day. She had been bedridden and unable to walk for some time but, I was coming to get her to go to the Riverwalk to go shopping. He told her she needed to stay in the hospital for a while longer to get better. After his conversation with Mom, he proceeded to tell my sister that my services as the POA were no longer needed as mom was able to express her wishes and was cognizant of things going on around her. She just had major surgery and is planning a shopping trip but she is competent?!? I joined the family at the hospital and requested a conference with Dr. Miller. We started a discussion in the hallway where Dr. Miller proceeded to tell me that legally, I had no right to intervene on my mother's behalf because she didn't want to die. I told Dr. Miller that he can't have it both ways. When she is saying she wants to go home and go on hospice care, she isn't competent and shouldn't be making decisions but when she doesn't want to "die" she is capable of making those decisions. Ummm excuse me?!? When asked - do you want to die- I think everyone would probably say no. If she had said yes, would they have called her suicidal and put her in restraints again?? We went on over and over covering the same points, neither wanting to give an inch. In walked her primary nephrologist and I swear I saw a halo over that man's head. I was in the process of telling Dr. Miller that when I got there my mom was irritated with me for taking so long to come in that day because we were supposed to go shopping for a Mercedes and I was late per usual. Hold on to your seats for this one. He then told me she wasn't in a position to be making life changing decisions like buying/selling cars or mutual funds. What?!? She can't buy or sell a car because it is a life changing decision but, she can choose to seek medical care or not because that isn't life changing?!? Isn't wanting to go home to die with some dignity the ultimate life changing decision? Am I missing the forest for the trees? I had expressed several times that even before this latest medical crisis, mom had expressed a great deal of doubt and hesitancy to continue her treatment and in fact the day she was hospitalized, she had told the angel nephrologist that same thing. But, apparently coming from me, that meant nothing. The nephrologist stepped in and informed Dr. Miller that my mom's Wegner's disease was terminal and that mom had expressed a great deal of hesitancy about continuation of her treatment with him as well. Dr. Miller was finally in a position where there wasn't much else left to say but that he would testify to his concerns at the ethics committee. Dr. C, the nephrologist joined us in Mom's room and had a nice talk with mom where he explained to her that she wasn't going to get better and she told him yet again, she just wanted to go home. Dr. C told her he would tell the ethics committee his view on her case having been her primary care physician and he wished her the best of luck on her journey. Dr. C is a man, like Dr. Miller, that I will never forget but for a totally different reason. He listened to a woman and her family and he walked us through what was a very difficult decision. Even knowing we wanted to take her home, we didn't know what meds to keep her on to make her comfortable and he helped navigate that maze with us to do what was best for her which was our ultimate goal anyway.
Friday afternoon, I had to testify to 1 man who held my mom's future in his hands. He was the "ethics committee". I had to again recount the events of the last year, the last few months, the last few days to one other person who didn't have a stake in the fight one way or another and he had the ultimate power to decide if I could fulfill my promise to my mother. After hearing my testimony, after talking to Dr. C, Dr. Miller and even my mom - who during her testimony was clear as a bell and able to relay to him she knew her kidney disease was killing her and she didn't see why there was such a fuss about her going home, a decision was made to allow her to leave the hospital on hospice and to being her journey home. Unfortunately, we lost quality time with mom during this process because it took 3 days after that to finally get her to her house. It was a rollercoaster that had far more downs than ups. Saturday, mom had a good day. She was awake and clear. I had a heart to heart with Mom that day. I asked her again if this is what she truly wanted. Looking me in the eye, my mom told me that it was exactly what she wanted - to just go home even knowing that meant she would soon die. In the clearest of voices and thought, my mom told me she knew this was a hard choice and journey and that she knew I would be the one who could see it through, that's why she had asked me to in November. In that moment, I was given the peace from her that I needed. I had done what she had asked. I had fought the hard fight and we were going home. I never really saw my mom again after that conversation. The days after that were filled with confusion and pain...sometimes even disdain and anger for those she loved. I will hold on to that moment and know in my heart that no matter what I was told along the way or since, I did what my mom asked of me and she knew I loved her.
Someone needs to hear about her journey, our journey. What we went through needs to be shared with other people so they know what to do in the same situation we were faced with. Surely, the pain, agony and frustration we went through to get her to where she wanted and needed to be wasn't for nothing. I am baffled and confused about our country and our views on the right to die issue. So many of us look at our animal population as just property. Yet, in their most desperate times of need, pain and suffering, we choose to do right by them and assist them in their transition and ease their pain. Yet, we don't have an option to do this for what we should care about the most - our fellow man, our loved ones, our family, our parents, our children, our friends. We don't have a way to ease their painful last days and help them in their transition because of some belief system that calls it is a sanctity of life issue. I invite anyone who doesn't feel we should assist them in their transition to take a journey with a loved one and watch them suffer through the pain, the confusion and the frustration and tell me they feel the same way after. I invite them to hold the hand of a loved one gasping for air as they drown with their lungs filling with their own bodily fluids. I invite them to see their bodies ravaged by infection and know the drugs they are getting for the pain aren't really controlling it. As painful as this was to write, I hope someone out there gains some insight from it and it provides them some guidance as they are faced with these same issues with their family, loved ones, or friends.
At long last, the journey for mom is over....but I feel my journey to see this doesn't happen to someone else has just begun.
Insert your Catchy title here
Okay....I am trying to do better about writing more because I know this is my great "escape" or my "release". The problem is there is so much in my head and heart right now, I don't know where to begin to start. I know some of you wittier people (smartasses that I know and love) will tell me just begin at the beginning but, I don't know where that is right now. I find myself flooded with emotion that I am doing my best to keep under wraps....at least for the time being. Why? Because I have so much to do that I am afraid if I let even the tiniest bit of that emotion loose, everything that has been stored away for so long will just come gushing and pounding me like a tidal wave.
I have started my last two mornings with a brokenhearted daughter in tears. As a mother, that breaks my heart that I can't "fix" it. I know she will be okay in time. Have you ever noticed "time" is a four letter word?? I don't know how to make things better for me let alone her or the other two. I am surrounded by such chaos, sadness and lack of direction. Have you ever taken total control away from a control freak?!? Trust me, it isn't a pretty thing. I definitely feel I have no control over the situation I am in and it has escalated my sense of helplessness to a level I'm not sure....even with my assault...that I have ever felt.
So, here I sit, dazed and confused and looking for a road map on how to navigate my way through the uncertainty that is my life right now. Maybe if I could just get work on the same page, or maybe if I could just find a way to make peace with mom, or maybe if my house wasn't turned upside down, or maybe if my kids weren't starting a new school that I'm not sure I am totally sold on anyway....or maybe if I knew what I wanted to be when I grew up, I wouldn't be so helplessly and hopelessly lost at the moment.
If you see Pandora....tell her I'm looking for her!
xoxo
I have started my last two mornings with a brokenhearted daughter in tears. As a mother, that breaks my heart that I can't "fix" it. I know she will be okay in time. Have you ever noticed "time" is a four letter word?? I don't know how to make things better for me let alone her or the other two. I am surrounded by such chaos, sadness and lack of direction. Have you ever taken total control away from a control freak?!? Trust me, it isn't a pretty thing. I definitely feel I have no control over the situation I am in and it has escalated my sense of helplessness to a level I'm not sure....even with my assault...that I have ever felt.
So, here I sit, dazed and confused and looking for a road map on how to navigate my way through the uncertainty that is my life right now. Maybe if I could just get work on the same page, or maybe if I could just find a way to make peace with mom, or maybe if my house wasn't turned upside down, or maybe if my kids weren't starting a new school that I'm not sure I am totally sold on anyway....or maybe if I knew what I wanted to be when I grew up, I wouldn't be so helplessly and hopelessly lost at the moment.
If you see Pandora....tell her I'm looking for her!
xoxo
Monday, August 24, 2009
Time....the Great Conundrum
If you are reading this post expecting my normal charm and wit... you might want to stop now. This post will be anything but charming or witty. I find myself in a real conundrum.
I sat last week, watching time slip through my hands. As I watched the boxes filled with barbie dolls and hot wheels make their way one by one down the stairs and out the door labeled "give away", it hit me like a ton of bricks. I don't have "little" kids any more. As I saw the posters and pictures change from Minnie Mouse to fairies and horses, I felt little pieces of my heart breaking. No one else around me seems to be having the same issues with this that I do. Is it different for dads? I know kids want to grow up before they really know what responsibility comes with being "grown up" so this is all lost on them really. I know I can't keep them young forever but, right now, with the loss of mom it feels like just 1 more piece of me I will never get back. Who knew that so much of my own identity, I tie directly to my children. Who will I be when they leave my home and are on their own? Will I still be mom first and then a business woman or will I have to redefine who I am? I want to slow time down and make it crawl. There's the conundrum.
On the other side, I want to make time whiz by. Everyone tells me - "It will get better in time." I want it better now! How much time does it take?!? I don't want to feel the ache and pain of losing a loved one any longer. I don't want to look at every event and think "Mom would have loved to see the kids do that." I cried at a freakin' band concert for heavens sake. I don't want to feel the tear tracks on my cheeks any longer because I just can't get past the events of the last 6 weeks...6 months....year. I don't want to look at every event and be so consumed by the magnitude of the loss that I can't enjoy the moment.
I'm trapped between two very parallel worlds not wanting to be in either one. Those of you who know me know, I don't do well when I feel trapped. So, here I sit. The first day of school ....the first day of public school for the kids. My house is eerily silent. So silent, you can hear more pieces of my heart breaking away. Moments, lost forever in a haze.
Brokenhearted Pandora biding you peace and harmony
xoxo
I sat last week, watching time slip through my hands. As I watched the boxes filled with barbie dolls and hot wheels make their way one by one down the stairs and out the door labeled "give away", it hit me like a ton of bricks. I don't have "little" kids any more. As I saw the posters and pictures change from Minnie Mouse to fairies and horses, I felt little pieces of my heart breaking. No one else around me seems to be having the same issues with this that I do. Is it different for dads? I know kids want to grow up before they really know what responsibility comes with being "grown up" so this is all lost on them really. I know I can't keep them young forever but, right now, with the loss of mom it feels like just 1 more piece of me I will never get back. Who knew that so much of my own identity, I tie directly to my children. Who will I be when they leave my home and are on their own? Will I still be mom first and then a business woman or will I have to redefine who I am? I want to slow time down and make it crawl. There's the conundrum.
On the other side, I want to make time whiz by. Everyone tells me - "It will get better in time." I want it better now! How much time does it take?!? I don't want to feel the ache and pain of losing a loved one any longer. I don't want to look at every event and think "Mom would have loved to see the kids do that." I cried at a freakin' band concert for heavens sake. I don't want to feel the tear tracks on my cheeks any longer because I just can't get past the events of the last 6 weeks...6 months....year. I don't want to look at every event and be so consumed by the magnitude of the loss that I can't enjoy the moment.
I'm trapped between two very parallel worlds not wanting to be in either one. Those of you who know me know, I don't do well when I feel trapped. So, here I sit. The first day of school ....the first day of public school for the kids. My house is eerily silent. So silent, you can hear more pieces of my heart breaking away. Moments, lost forever in a haze.
Brokenhearted Pandora biding you peace and harmony
xoxo
Friday, August 7, 2009
Profoundly Sad
Okay....this isn't going to be a very long rambling blog like some of mine are but, I did want to let the cyber world know that I lost my mom yesterday. Even though I knew it was coming, I don't think you can ever really prepare for it. I know I thought I was but it hit me like a bus yesterday. No matter how much I try to tell myself it will all be okay, every time I am drying a tear from the faces of my children it hits me all over again and I know that I can't fix it and that SUCKS!
So much has happened in the last few weeks and I would really like to share with the world because I think it is important to share your life experiences so people can gain something from them. I just don't have it in me today to put it all out there for the world and to relive it in my head.
So...having said that...I want to thank all of you who have been so supportive of me and my family during the last year. I also want to tell you that I will be back....soon....very soon....maybe even later today when I am a little more at ease with things and thinking more clearly.
xoxo
Pandora
So much has happened in the last few weeks and I would really like to share with the world because I think it is important to share your life experiences so people can gain something from them. I just don't have it in me today to put it all out there for the world and to relive it in my head.
So...having said that...I want to thank all of you who have been so supportive of me and my family during the last year. I also want to tell you that I will be back....soon....very soon....maybe even later today when I am a little more at ease with things and thinking more clearly.
xoxo
Pandora
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