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Trying to understand the experience (and a bit of a rant)

Forums Caregiver Community Trying to understand the experience (and a bit of a rant)

  • Post
    Lori C
    Participant

      I am trying to sort through my own feelings and emotions of the past two years – being a caregiver for Will, the whole nutty clinical trial process, doctors who should know what they are talking about but didn't – all of it.  I'm also trying to write about it, hoping that my experiences might be interesting and even useful to others. 

      I am trying to sort through my own feelings and emotions of the past two years – being a caregiver for Will, the whole nutty clinical trial process, doctors who should know what they are talking about but didn't – all of it.  I'm also trying to write about it, hoping that my experiences might be interesting and even useful to others. 

      If anyone would like to dialogue with me about these things, please email me!  Brennan07at aol.com     I am still grieving in a way that I cannot quite understand – I thought I was well aquainted with grief but found out this was a very different experience than any other I've ever had.    I have tremendous guilt, anger, and just sadness. 

      I know many people have had wonderful hospice experiences.  Unfortunately, I did not.  The hospital we took Will to was entirely unused to dealing with people undergoing advanced cancer treatment (it was a local community hospital, same hospital Bill went to two weeks ago) and pushed a DNR and hospice from the moment we arrived.  The hospice team insisted on pushing their views at every turn, and I had to fight extremely hard to get Will treatment while waiting for actual information and facts (from his oncology team at Rush and from test results).  They did not want to do any acftive treatment; so sure they were that it was futile.  I kept wanting facts, they kept treating me like I was insane.  "He's very sick", they kept telling me.  I wanted to scream, "Yes, not having recently arrived on this planet, I'm aware of that!  I've been taking care of him for a year and a half!"  In the aftermath, they (the hospice people) kept sending me "How to get through your first Christmas without your Loved One" booklets and such (I'm Jewish) and warning me against "feelings of anger". 

      Well, I have a lot of anger – towards a system that forces patients to sift through insane amounts of highly techinical information at the most difficult time of their life to unearth appropriate clinical trials, towards pharmaceutical companies that are motivated by profit solely, towards Md/Ph.Ds who should , but do not, have any idea what they are talking about at critical junctures when lives depend on them – and that's not even touching on insurance companies.  I was also completely unprepared for the emotions I would experience as a caregive; how focused I became on Will to the degree that I really felt we were one person – and then when I lost him, felt absolutely ripped in half. 

      Anyway,, I would really like to talk (I do best via email but can do phone) with others on some or any of these subjects! 

      Lori

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        Sherron
        Participant

          Lori, I know your story as I read of you and Will .  You were such a  great advocate for him.  I know you did a great deal of research and tried to find the best solution that could help Will.

          My story is a bit different.  I recently lost my husband on Nov 30, 2010.  But, I do feel your pain.  I too, feel, I know I have lost the other half of myself.  I, too, am struggling, daily on how to do deal with this, how to grieve, how to go to work, how to run a household by myself, and sometimes it just feels like too much.  He was the love of my life, my very best friend, and my soul-mate.  I don't have all the doctor issues that you seem to have.  Jim took another approach and was all about QUALITY OF LIFE, rather than the quantity.  He did only natural , alternative treatments.  So he really did no treatments, except to remove the Mel, and then removed the local recurrence.  He led a wonderful life for 4 years.  And in early September, I could see a change and the beast was doing what it wanted.  It was slowly getting him.  I watched him slowly slipping away from me.  It was heartbreaking to see.  At the end, he was receiving blood tranfusions every 2 weeks.  He finally consented to a surgery, he said "one chance", meaning only treatment he would do.  Well, he was so weark and within 18  hours of death they said, they went in to fix the problem..they were able to re-sect the one place that causing the greatest problem, but he was so unstable during his surgery, they could do no more…and there were 12 to 13 more tumors…Mel was raging within his intestines.  He was very, very sick, but kept his sense of humor, and still his optomism, until the very end.  The VA treated us very well.  They moved him to hospice on Nov 29th, in the afternoon.  It was very hard for him, the move…seemed to increase the pain.  Jim said he was just staying there until he got strong enough to go home.  He never gave up. They called it the Community Living Center.  He lived 3 years longer than the Oncologist said he would without treatment….In the end, Jim did go home, not to his physical home, but to his heavenly home.  I miss him so much….4 days short of 43 years with him.   I feel empty, like a shell of a person, but I see life going on around me.  It is hard, to see  how you can be at such a standstill, and you hurt so much, and yet people move on with their lives.  I believe this is therapy almost for me to let this out.  Lori, I am going to a grief counselor, I went to my doctor because I could not sleep..both of these have helped.  I am on an anti-depressant and have been.  The doctor gave me something to make it more effective…I also had a major car accident during all this, totaled my car.  My back is hurting.and am taking medication for that.  I am also keeping close to God.  These are the only things I know to do.  I know this will be a long process.  You need to talk this out.  I also journal..All of these are helping.  I still hurt so bad..sometimes I can't find a reason to go on….but I have to on for Jim and my kids and grandchildren..  IN the end, Jim was a Warrior and he did win the battle.  He is no longer in pain.  MEL IS GONE…AND MEL IS NOT THE WINNER AND HE NEVER WILL BE BECAUSE ALL OF US ARE FIGHTING HIM!

          Take Care Lori,

          Sherron, wife to Jim FOREVER

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          Sherron
          Participant

            Lori, I know your story as I read of you and Will .  You were such a  great advocate for him.  I know you did a great deal of research and tried to find the best solution that could help Will.

            My story is a bit different.  I recently lost my husband on Nov 30, 2010.  But, I do feel your pain.  I too, feel, I know I have lost the other half of myself.  I, too, am struggling, daily on how to do deal with this, how to grieve, how to go to work, how to run a household by myself, and sometimes it just feels like too much.  He was the love of my life, my very best friend, and my soul-mate.  I don't have all the doctor issues that you seem to have.  Jim took another approach and was all about QUALITY OF LIFE, rather than the quantity.  He did only natural , alternative treatments.  So he really did no treatments, except to remove the Mel, and then removed the local recurrence.  He led a wonderful life for 4 years.  And in early September, I could see a change and the beast was doing what it wanted.  It was slowly getting him.  I watched him slowly slipping away from me.  It was heartbreaking to see.  At the end, he was receiving blood tranfusions every 2 weeks.  He finally consented to a surgery, he said "one chance", meaning only treatment he would do.  Well, he was so weark and within 18  hours of death they said, they went in to fix the problem..they were able to re-sect the one place that causing the greatest problem, but he was so unstable during his surgery, they could do no more…and there were 12 to 13 more tumors…Mel was raging within his intestines.  He was very, very sick, but kept his sense of humor, and still his optomism, until the very end.  The VA treated us very well.  They moved him to hospice on Nov 29th, in the afternoon.  It was very hard for him, the move…seemed to increase the pain.  Jim said he was just staying there until he got strong enough to go home.  He never gave up. They called it the Community Living Center.  He lived 3 years longer than the Oncologist said he would without treatment….In the end, Jim did go home, not to his physical home, but to his heavenly home.  I miss him so much….4 days short of 43 years with him.   I feel empty, like a shell of a person, but I see life going on around me.  It is hard, to see  how you can be at such a standstill, and you hurt so much, and yet people move on with their lives.  I believe this is therapy almost for me to let this out.  Lori, I am going to a grief counselor, I went to my doctor because I could not sleep..both of these have helped.  I am on an anti-depressant and have been.  The doctor gave me something to make it more effective…I also had a major car accident during all this, totaled my car.  My back is hurting.and am taking medication for that.  I am also keeping close to God.  These are the only things I know to do.  I know this will be a long process.  You need to talk this out.  I also journal..All of these are helping.  I still hurt so bad..sometimes I can't find a reason to go on….but I have to on for Jim and my kids and grandchildren..  IN the end, Jim was a Warrior and he did win the battle.  He is no longer in pain.  MEL IS GONE…AND MEL IS NOT THE WINNER AND HE NEVER WILL BE BECAUSE ALL OF US ARE FIGHTING HIM!

            Take Care Lori,

            Sherron, wife to Jim FOREVER

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              Lori C
              Participant

                Thank you Sherron.  I agree, those who have died have not "lost" their battle.  All of us leave this earth; we did not "lose" a fight. 

                I have thought of and looked into grief groups.  My relationship with Will did not fit into any easy -to-label "category" (e.g. spouse, parent, child) and it's been hard, as a result, to find anything that might be a good place.   I do journal, and I write (I am the Jan 8th "host" of a blog diary on Daily Kos, and it will be about Will, and the experience of melanoma and grief; I'll post a link later in the week if anyone would like to read it).  It is incredibly hard because the caregiving experience is unlike any other I've ever had.  I lost a sister to homicide, and like most people my age, have not escaped life without many losses.  But I believe that actual neurological or biochemical changes took place in my brain as a result of spending 18 months so attuned to 'Will and his emotional and physical needs; now with this absence, I need to get "rewired" again in order to relate to other people normally again.

                The first time I went to clinicaltrials.gov I sat down and cried.  It was so overwhelming.  I didn't even understand the language being used, the terminology.  I had NO idea how to sort the information out.  I didn't know about B-raf or other genetic testing from Will's first oncologist – they never mentioned it (and this is a melanoma specialist with all kinds of accolades)..  I had to arrange the testing myself througt another hospital and doctor.  It was a re-inventing of the wheel every single day and I lost so much valuable time.  Worst, I didn't know what I didn't know – and more time was lost in that.  I feared angering his doctors, angering Bristol Myers Squibb (with good reason, it turned out) and the whole experience was just so difficult in ways I'd never anticipated.   During his last hospital stay, I had to fight with the pulmonary specialist to do a thoracentesis – which was medically the correct step and would (and did) make him more comfortable because, the guy told me, "It's not a cure!"  As though I thought removing some fluid from the lung area would cure stage IV melanoma!  It was appalling. 

                There were many great people – this board first among them – but boy, I have "issues" (heck I have whole subscriptions!) to work out….

                Lori

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                Lori C
                Participant

                  Thank you Sherron.  I agree, those who have died have not "lost" their battle.  All of us leave this earth; we did not "lose" a fight. 

                  I have thought of and looked into grief groups.  My relationship with Will did not fit into any easy -to-label "category" (e.g. spouse, parent, child) and it's been hard, as a result, to find anything that might be a good place.   I do journal, and I write (I am the Jan 8th "host" of a blog diary on Daily Kos, and it will be about Will, and the experience of melanoma and grief; I'll post a link later in the week if anyone would like to read it).  It is incredibly hard because the caregiving experience is unlike any other I've ever had.  I lost a sister to homicide, and like most people my age, have not escaped life without many losses.  But I believe that actual neurological or biochemical changes took place in my brain as a result of spending 18 months so attuned to 'Will and his emotional and physical needs; now with this absence, I need to get "rewired" again in order to relate to other people normally again.

                  The first time I went to clinicaltrials.gov I sat down and cried.  It was so overwhelming.  I didn't even understand the language being used, the terminology.  I had NO idea how to sort the information out.  I didn't know about B-raf or other genetic testing from Will's first oncologist – they never mentioned it (and this is a melanoma specialist with all kinds of accolades)..  I had to arrange the testing myself througt another hospital and doctor.  It was a re-inventing of the wheel every single day and I lost so much valuable time.  Worst, I didn't know what I didn't know – and more time was lost in that.  I feared angering his doctors, angering Bristol Myers Squibb (with good reason, it turned out) and the whole experience was just so difficult in ways I'd never anticipated.   During his last hospital stay, I had to fight with the pulmonary specialist to do a thoracentesis – which was medically the correct step and would (and did) make him more comfortable because, the guy told me, "It's not a cure!"  As though I thought removing some fluid from the lung area would cure stage IV melanoma!  It was appalling. 

                  There were many great people – this board first among them – but boy, I have "issues" (heck I have whole subscriptions!) to work out….

                  Lori

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                  Sherron
                  Participant

                    Lori, I do remember one time when I got mad a resident, that thought he was God….He said they wouldn't put the tube back in to pull the green-black bile out of Jim's stomach….It made me so mad….because IT gave him such comfort and relief.  Most of the time, he got real sick and threw it up, and it was violent vomiting.  I told my family THE LITTLE DOCTOR thought he was a hot shot, and bigger than God, and that I wanted to spit in his face.(nothing like me, this type of attitude).  He came back later and said they could do it.  So they did do it several time.  Anything to give a person comfort when they are oh so miserable. 

                    I know you have many issues to deal with, and your situation is different than being an actual family member, but it seems like you were his family..you were his advocate, when family did not do it.  I pray you can find some comfort, that we both can as we travel this road….it has many unknown factors for us.  It is so difficult.  I am happy I am still working, it helps me during the day.  The evenings and nights are my worst and the weekends.  After being married 43 years, I at a loss how to live my life without him.

                    My e-mail I think is in the profile, if you ever want to get in touch.  I have not yet entered the final entry on his profile.  It is just so hard to go there, right now.

                    Just know you are not alone in your pain and grief.

                    Take Care,

                    Sherron, wife to Jim FOREVER

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                    Sherron
                    Participant

                      Lori, I do remember one time when I got mad a resident, that thought he was God….He said they wouldn't put the tube back in to pull the green-black bile out of Jim's stomach….It made me so mad….because IT gave him such comfort and relief.  Most of the time, he got real sick and threw it up, and it was violent vomiting.  I told my family THE LITTLE DOCTOR thought he was a hot shot, and bigger than God, and that I wanted to spit in his face.(nothing like me, this type of attitude).  He came back later and said they could do it.  So they did do it several time.  Anything to give a person comfort when they are oh so miserable. 

                      I know you have many issues to deal with, and your situation is different than being an actual family member, but it seems like you were his family..you were his advocate, when family did not do it.  I pray you can find some comfort, that we both can as we travel this road….it has many unknown factors for us.  It is so difficult.  I am happy I am still working, it helps me during the day.  The evenings and nights are my worst and the weekends.  After being married 43 years, I at a loss how to live my life without him.

                      My e-mail I think is in the profile, if you ever want to get in touch.  I have not yet entered the final entry on his profile.  It is just so hard to go there, right now.

                      Just know you are not alone in your pain and grief.

                      Take Care,

                      Sherron, wife to Jim FOREVER

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                    JuleFL
                    Participant
                      Hi Lori,
                      I’m sorry to see you going through this, but I completely understand. I went through pure hell during the last 3 weeks of my husband’s life and would not post that experience anywhere. I am fortunate that the original hospice in my county is so good and that they allow me to go for grief counseling. According to my counselor, the anger is very normal and must be worked through. (A friend is bringing over a punching bag – I can’t wait) Just because you weren’t related to Will doesn’t mean that you would not have many of the feelings of grief. It takes a long time and is quite debilitating. If you need a break from the cold weather, you are welcome to come to Florida for a visit.

                      I’ll email you later – right now I need to get off my depressed butt and get a flapper for my leaking toilet. Ugh

                      Take care,
                      Jule

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                      JuleFL
                      Participant
                        Hi Lori,
                        I’m sorry to see you going through this, but I completely understand. I went through pure hell during the last 3 weeks of my husband’s life and would not post that experience anywhere. I am fortunate that the original hospice in my county is so good and that they allow me to go for grief counseling. According to my counselor, the anger is very normal and must be worked through. (A friend is bringing over a punching bag – I can’t wait) Just because you weren’t related to Will doesn’t mean that you would not have many of the feelings of grief. It takes a long time and is quite debilitating. If you need a break from the cold weather, you are welcome to come to Florida for a visit.

                        I’ll email you later – right now I need to get off my depressed butt and get a flapper for my leaking toilet. Ugh

                        Take care,
                        Jule

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                          Sherron
                          Participant

                            Jule, sounds like we are all  going through a deal of pain.  I think it will take a while.  I will pray for your  strength also.  I think each of us will handle it in a different was, but we ALL  will make it, because we have too.

                            Take Care,

                            Sherron, wife to Jim FOREVER

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                            Sherron
                            Participant

                              Jule, sounds like we are all  going through a deal of pain.  I think it will take a while.  I will pray for your  strength also.  I think each of us will handle it in a different was, but we ALL  will make it, because we have too.

                              Take Care,

                              Sherron, wife to Jim FOREVER

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                              Sherron
                              Participant

                                Sorry, if I got too graphic on my post…it's just that little resident made me so very mad…I am sorry if I offended anyone., and vented too much.   You are right Jule, the last few weeks were Hell.  It was awful.  And the grief, goes on and on.

                                Take Care,

                                Sherron, wife to Jim, FOREVER

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                                Sherron
                                Participant

                                  Sorry, if I got too graphic on my post…it's just that little resident made me so very mad…I am sorry if I offended anyone., and vented too much.   You are right Jule, the last few weeks were Hell.  It was awful.  And the grief, goes on and on.

                                  Take Care,

                                  Sherron, wife to Jim, FOREVER

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                                  Lori C
                                  Participant

                                    I don't think it's possible to "vent too much" and we are all familiar with the physical realities of this illness – it's just for some people, talking about it brings relief and others, pain, I think.  I have been writing about the caregiving experience a lot – this is part of one piece:

                                    There are moments in life, frequently written about in mothering and romantic literature, where the world truly seems to contract, when it holds only two living beings – I and thou, to quote Martin Buber.  I've been fortunate enough to experience three types of this dual dialogue living; falling in love with a partner, later, carrying and caring for my children, and finally, as caregiver and best friend to Will. 
                                     
                                    Maybe it's because the caregiver role combines the elements of "foxhole survival mode" with the intense physicality of caring for a very ill person, or maybe because Will and I fought so many battles together – only some of them medical – that we were also "chaverim" (comrades) in the ultimate war – that for autonomy and self-actualization as well as survival – but of all three of these experiences, mine with Will's was the most all encompassing, intense, and astonishing .  It changed me on what felt like a cellular level, I was literally no longer the same person anymore.  Just as studies have shown that the brain can quickly rewire so that a person "feels" a vibrating cell phone where it is usually kept even when it's not there, I believe the brain of a caregiver likewise rewires.  Every instinct, every sense, is sharpened and intensified. 
                                     
                                    There is a dialetic – the individual you are caring for is present in your every thought as either the base or the superstructure.  Being apart from them physically is tremendously hard, but being apart from them psychologically is impossible, at least it was for me.  In her memoir describing her family's fight against AIDS, Elizabeth Glaser wrote that "I was sending all my love at all times to Ariel (the daughter she was caregiving for), so I was never really emotionally available to anyone else."  Novelist Alice Hoffman, in a fictional work about a mother caring for a terminally ill child, echoes this sentiment, writing, "Of course Polly knew she couldn't let other people know that only Amanda mattered…."
                                     
                                    You know it's not okay to feel this way.  You are supposed to feel guilty about it.  You are neglecting friends, family, yourself, issues that matter.  You don't, though – feel guilty, that is.  You might pretend to – you agree with those who tell you, solemnly and out of their "deep concern", that you are isolating yourself, you are focusing on one person at the expense of everything else in your life.  It's undeniably true, after all, and no sense in getting upset at hearing truths.  It just doesn't matter, because you  know, as surely as you know the hand in front of your face is a hand and not a Maserati, that there is absolutely no choice and even if you wanted to (and you do, once in a while) live differently, you can't. 
                                     
                                    Having a seriously ill person in your life is an excellent illustration of the "ham and eggs" commitment dilemma.  The chicken's commitment is by definition significantly less than the pig's, and as primary caregiver, you are, alas, the pig.  You can try to spread the "burden" (it's not the right word, really – it's no more of a "burden" than breathing  – but that's how it's viewed by others) but it doesn't work, really.  I am sure that it is theoretically possible to have a team of people function in this most intimate and intricate of relationships, patient and primary caregiver, but I'm not familiar with such circumstances.  Usually, though, it's a spouse and partner, or parent and child, who find themselves locked together in this particular bond.  That wasn't the case with Will and I – and that presented both difficulties and gifts.
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                                    Lori C
                                    Participant

                                      I don't think it's possible to "vent too much" and we are all familiar with the physical realities of this illness – it's just for some people, talking about it brings relief and others, pain, I think.  I have been writing about the caregiving experience a lot – this is part of one piece:

                                      There are moments in life, frequently written about in mothering and romantic literature, where the world truly seems to contract, when it holds only two living beings – I and thou, to quote Martin Buber.  I've been fortunate enough to experience three types of this dual dialogue living; falling in love with a partner, later, carrying and caring for my children, and finally, as caregiver and best friend to Will. 
                                       
                                      Maybe it's because the caregiver role combines the elements of "foxhole survival mode" with the intense physicality of caring for a very ill person, or maybe because Will and I fought so many battles together – only some of them medical – that we were also "chaverim" (comrades) in the ultimate war – that for autonomy and self-actualization as well as survival – but of all three of these experiences, mine with Will's was the most all encompassing, intense, and astonishing .  It changed me on what felt like a cellular level, I was literally no longer the same person anymore.  Just as studies have shown that the brain can quickly rewire so that a person "feels" a vibrating cell phone where it is usually kept even when it's not there, I believe the brain of a caregiver likewise rewires.  Every instinct, every sense, is sharpened and intensified. 
                                       
                                      There is a dialetic – the individual you are caring for is present in your every thought as either the base or the superstructure.  Being apart from them physically is tremendously hard, but being apart from them psychologically is impossible, at least it was for me.  In her memoir describing her family's fight against AIDS, Elizabeth Glaser wrote that "I was sending all my love at all times to Ariel (the daughter she was caregiving for), so I was never really emotionally available to anyone else."  Novelist Alice Hoffman, in a fictional work about a mother caring for a terminally ill child, echoes this sentiment, writing, "Of course Polly knew she couldn't let other people know that only Amanda mattered…."
                                       
                                      You know it's not okay to feel this way.  You are supposed to feel guilty about it.  You are neglecting friends, family, yourself, issues that matter.  You don't, though – feel guilty, that is.  You might pretend to – you agree with those who tell you, solemnly and out of their "deep concern", that you are isolating yourself, you are focusing on one person at the expense of everything else in your life.  It's undeniably true, after all, and no sense in getting upset at hearing truths.  It just doesn't matter, because you  know, as surely as you know the hand in front of your face is a hand and not a Maserati, that there is absolutely no choice and even if you wanted to (and you do, once in a while) live differently, you can't. 
                                       
                                      Having a seriously ill person in your life is an excellent illustration of the "ham and eggs" commitment dilemma.  The chicken's commitment is by definition significantly less than the pig's, and as primary caregiver, you are, alas, the pig.  You can try to spread the "burden" (it's not the right word, really – it's no more of a "burden" than breathing  – but that's how it's viewed by others) but it doesn't work, really.  I am sure that it is theoretically possible to have a team of people function in this most intimate and intricate of relationships, patient and primary caregiver, but I'm not familiar with such circumstances.  Usually, though, it's a spouse and partner, or parent and child, who find themselves locked together in this particular bond.  That wasn't the case with Will and I – and that presented both difficulties and gifts.
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                                      Sherron
                                      Participant

                                        Just Beautiful, Lori!

                                        Take Care

                                        Sherron, wife to Jim FOREVER

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                                        Sherron
                                        Participant

                                          Just Beautiful, Lori!

                                          Take Care

                                          Sherron, wife to Jim FOREVER

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