Tired and frustrated

Jwisch2
Jwisch2 Member Posts: 4
in Caregivers #1

Well 9 months into cancer.  cancer is Back in  the locations they previously did surgery.  Surgery isn’t a option or more radiation.  2 weeks ago we were told this.  Pet scan today and appt with the oncologist.  I leave feeling very frustrated.  I am at the point I just want them to leave him alone.  His has been thru a lot.  We are now at the point I can’t leave him by himself,  my daughter won’t stay at the house if I’m not there because she is scared of him.  I miss my kid he has taken every once of my time and energy.  Which I would give him the world but he has taken us thru the ringer this whole time too.  Mean and not right.  Appointment today they told him this cancer would take his life.  But then want to put him in a clinical trial which said has little chance of success.  I don’t want this.  I am so tired of watching him and us suffer.  He can’t even give a cashier the correct money.  He kept trying to give one $40 for a $14 bill.  I have to hover around him to make sure he doesn’t get lost and I’m afraid someone will take advantage of him because they don’t know what’s going on.  I feel like they are talking him into all this stuff and they know mentally he is compromised.  I speak Up with my concerns about maybe we should be discussing quality of life over trying all this stuff and probably making him sicker.  But I am talked right over.  Even though I am the one that has to get him to these appointments and take care of him at home. i know god has a plan and trying to have faith.  All I can do is just keep trucking.

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Tired

    I understand where you are coming from.  If the doctors are talking over you, maybe you need to find new doctors.  When my husband decided enough was enough, I can honestly say that all his doctors stood by his decision.  None tried to talk him out of it and to have more treatments.  We chose quality of life and they all understood.  And after one bad experience, one doctor said he thought hospice was the way to go.  Thankfully my husband's mind was still working and after much discussion between us and only us, we decided to go with hospice.  

    Since you are the one seeing your husband on a 24/7 basis, you and only you know exactly how he is doing and if his doctors don't agree then you need to change doctors.  Some doctors just want to push treatment on their patients even though they know it won't help.  Get power of attorney and then you can make all the decisions.  Might be hard to do now if your husband's mind is compromised but something you should definitely check into.

    Wishing you and yours peace and comfort.

  • GingerMay
    GingerMay Member Posts: 134
    #3
    Agree

    I am sorry for what you are going through. I agree with what LadyLacy said. New doctors or a second opinion may give you a different perspective. I know that is exhausting though.  

    Some doctors are great, but I have seen where others have not done what is in the patient's best interest, bur rather what seems to serve an objective for them personally - getting another data point in a test or trial, procedures to further develop their skillsets. That is my opinion only.  I'm just saying to trust your own knowledge of the situation and do what makes sense to you.  You don't have to explain anything to anyone, just tell them your decided course of action.  If something just doesn't seem right, it just might not be. All the best to you and your dear husband.  

     

  • Jwisch2
    Jwisch2 Member Posts: 4
    #4
    Thank you

    I appreciate your input.  So sad watching them tell him cancer is going to take his life and in the very next sentence say “but we have a treatment option for you.  I know all he hears is there is a treatment option. I read it over and it states it’s not meant to be a cure but to test good and bad side effects and see if it reduces tumor size.  I have also Worked in CT and interventional radiology for 11 years. I work with numerous patients thru their initial scans and their follow ups. If there is one thing I can do it’s understand a radiology report. I took his scan to my radiologist and wanted to know what he thought.  He read thru it and said I want to be really direct with you and after reading this if it was my spouse I wouldn’t let them do any clinical trials. He told me where The disease would spread next and if he participated it might give him another month maybe.  He also said when he worked in a Teaching hospital there was a saying of publish or perish. Meaning a lot of doctors are being pushed for publicated reseach versus best interest of patients.  I am hoping I can catch him in a lucid moment so I have a good talk with him.  I have been thinking about talking To a attorney to get power of attorney also. 

  • k2oly
    k2oly Member Posts: 13
    edited April 2018 #5
    Jwisch2 said:

    Thank you

    I appreciate your input.  So sad watching them tell him cancer is going to take his life and in the very next sentence say “but we have a treatment option for you.  I know all he hears is there is a treatment option. I read it over and it states it’s not meant to be a cure but to test good and bad side effects and see if it reduces tumor size.  I have also Worked in CT and interventional radiology for 11 years. I work with numerous patients thru their initial scans and their follow ups. If there is one thing I can do it’s understand a radiology report. I took his scan to my radiologist and wanted to know what he thought.  He read thru it and said I want to be really direct with you and after reading this if it was my spouse I wouldn’t let them do any clinical trials. He told me where The disease would spread next and if he participated it might give him another month maybe.  He also said when he worked in a Teaching hospital there was a saying of publish or perish. Meaning a lot of doctors are being pushed for publicated reseach versus best interest of patients.  I am hoping I can catch him in a lucid moment so I have a good talk with him.  I have been thinking about talking To a attorney to get power of attorney also. 

    i agree

     

    i agree with the others about finding practitioners who LISTEN to what ya'll want/need.

     

    i'd highly recommend the book Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande (http://a.co/5d3vo7a). Dr Gawande clearly explains that few doctors are trained to pause and consider whether extending life is what a patient wants. better yet, he provides excellent examples of how one can start conversations with their loved ones and doctors about this very issue.

     

    you probably need medical power of attorney to have much of a say in things. without that, doctors are likely to listen only to your sweetie. and he's likely to hear and fixate on just one word/concept in conversations with doctors. that is, if they say there's an option, he might fixate on that or if they talk about tumor markers, he might fixate on them and forget the whole "quality of life" thing. it's common from what i understand.

     

    still, i wonder if doctors would listen if you reframe what you're trying to tell them? whether you talk with them during appts or later, i wonder if they would react differently if you said you wanted to "provide context" or "provide an objective opinion" in order to help them provide the best possible care for your sweetie? i've found that if doctors ask my loved one about how the side effects are, my loved one provides a tiny bit of info about whatever side effect is bugging her that day. but she forgets (or doesn't notice) other issues that in my opinion are far more problematic. i don't have any legal basis for giving my opinion because i'm just the best friend / caregiver not a spouse or legal family member. but if i *could*, i'd love to contact the doctor and say that i think that during the previous appointment, my person might get distracted by the conversation or forget to mention side effects and how bad they've become. i'd try to frame this information as useful for the doctor so they can help the patient in ways that patient failed to mention in the previous appointment.

     

    as for catching him in a lucid moment... -sigh- sometimes i probably have that hope 1000 times a day. "if she seems 'all there', i have to remember to ask her about X". "if she seems to understand Y today, i can't forget to remind her about Z". -sigh- it gets old.

     

     

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