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    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #1

    Apr 27, 2007, 04:28 PM
    How would you handle this?
    Okay, some of you know that my father has been ill recently, he will be 74 next month. I found out tonight that he is still vent dependent (it has been almost 2 months). In speaking with his nurse tonight I found that he is considered end-stage. He will never get off the vent.

    Dad has been a very ill person for most of his life. He was addicted to many things his entire life, and has suffered severe depression, been hospitalized several times for his depression and takes about 14 different medications a day.

    He continues to express to the nurses that he is done. Done fighting. He has fought the good fight all of his life and is just tired. The doctors, nurses and social worker have spoken to Mom about this, but they tell me that she is not quite ready to let go. She still believes that there is still hope.

    Dad is full code so if there is a medical emergency they must do all they can to save his life. Mom is the only one who can change him to a DNR as Dad has periods of dementia daily and is not considered of sound mind to make decisions regarding his medical treatment.

    I am over 600 miles away from them, and due to school I have not been able to get away to see my parents. Nursing School only allows 2 missed days per semester. So I will be going up within the next couple of weeks, after finals and getting the kids settled here (they don't finish school for another month).

    Now, for my dilemma... The nurse and the social worker have asked me to talk to Mom after I get up there and help reinforce his wishes. I just don't know how to approach it.

    Sorry, I am rambling, but I just had to get this off my chest. Got to stay strong for my kids, got to focus on finals, and hubby is not much of a listener.

    Again, sorry, I just had to vent.
    Emland's Avatar
    Emland Posts: 2,468, Reputation: 496
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    #2

    Apr 27, 2007, 05:16 PM
    Vent. My dad went so quickly we didn't have time to have to consider DNRs and things like that.

    I can't imagine the stress you must be under. School, kids and sickly parents can quickly wear you down. I hope you take some time for yourself - if only to get a pedicure.

    You don't appear to have much time to visit mom and dad. Maybe your mom justs needs to hear from you that it is okay for her to let him go. Dad must be miserable and has no quality of life and is ready. Do they have local clergy that you could discuss things with, too?

    Sending cyber hugs your way. Be well.
    Adoredevotion's Avatar
    Adoredevotion Posts: 44, Reputation: 1
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    #3

    Apr 27, 2007, 05:17 PM
    Im so sorry to hear about that J_9. Its never an easy situation when dealing with DNR and DNH type of situations. I had to go through this situation with my father about 4 years ago. He was on a vent as well and his organs began shutting down. I think that its even harder for us since we are in the medical field. Although it is a blessing to help others when it comes to our own families I believe can it can be a curse sometimes.

    I don't know if this helps but when it came to the point when my fathers kidney's shut down and the doctors told us there really was nothing else they could do for him reality set in hard. It feels like a empty pit inside your stomach and it feels like someone has knocked all the air out of you.

    I sat down with my mom in the ICU and said to her... "what do you think dad would want?". I told her that I knew she was scared to live without him and let him go but if she could picture herself talking to him what would he want in this situation. It was such a painful decision but my mother said that he wouldn't want to live in pain. Letting go of him was the hardest thing she has ever had to do.

    Maybe just try asking your mom if she thinks your dad would want this, talk to her about how she is scared to let him go and go with the conversation from there. How are you holding up? You have a lot on your plate with school and the family, I hope that you are finding a way to cope and deal with everything as it comes at you. If there is anything any us can do to help in anyway let us know. I know I have only been on this site for a short time but it seems that you are very much loved and liked. Please keep up updated and vent anytime you need to... and never apologize for doing so. I hope this has helped in someway.

    Take care,
    Adoredevotion
    shygrneyzs's Avatar
    shygrneyzs Posts: 5,017, Reputation: 936
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    #4

    Apr 27, 2007, 05:29 PM
    You are not rambling. Your Mom still has the view that your Dad can regain his health, or at least to a state where he is less ill than he is now. Maybe she is praying for that miracle. While I do believe in miracles, I also believe that there is the time to come to terms with what is right there.

    You are definitely in a hard spot. Would you Mom consider talking to someone in Hospice? Perhaps she would take what that person says not as personally as if you would say the very same thing. A different point of reference. At least to place the reality before her to think about. When you get there, may she be ready to listen to you. You said she is not ready to listen to the doctors, the nurses, and the social workers. Hospice comes from a bit different persective.

    Yes, it is hard to be the daughter and the professional nurse. You speak with both hats on and know what is and is not capable of being. How to approach your Mom? She will most likely tell you what all has been said to her about your Dad. Hopefully she will ask you if those people are right. Maybe that will open the door. Are there other children that will stand with you?

    My heart goes out to you. My prayers for you and your Dad and Mom. Huggssssss.
    RubyPitbull's Avatar
    RubyPitbull Posts: 3,575, Reputation: 648
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    #5

    Apr 27, 2007, 05:42 PM
    Oh, J_9. I am so sorry to hear of these latest developments. As shy says, you are not rambling honey.

    I think for now, you need to do what you can at home and get yourself through your final exams. It is not selfish. I think you need to wait until you can be there with your parents to fully assess the situation. You need to speak to your Dad, and see exactly where his health is at for yourself. If nothing else, you need to see him before any decision is made on this, so that you have an opportunity to say anything that you feel needs to be said to him. Then, speak with your Mom, if you feel it is time to let him go. Is your Mom religious at all? Is there someone else who's counsel she values? You may need to ask that person for help in this situation, if it comes down to it. But, for now, get through your exams. Be a support to your Mom via telephone. Then, go there and visit with your Dad. You will know what to do and what to say, when you can see what is going on for yourself.

    xxxxoooo MWAH to you my dear.
    Fr_Chuck's Avatar
    Fr_Chuck Posts: 81,301, Reputation: 7692
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    #6

    Apr 27, 2007, 06:18 PM
    It is tough, We did that with my Dad, because it was his wishes, and to me, the patients wishes are more important than my own opinion.

    Next is there any chance of him getting well and walking out of the hosptial? If the answer is no, the best thing you can do is try and make his last days as pain free as possible.

    But in the end all you can do is what you feel is right in your heart, there is really never any right or wrong in these matters
    Syujin's Avatar
    Syujin Posts: 10, Reputation: 1
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    #7

    Apr 27, 2007, 06:26 PM
    Well it depends on your point of view. On the one hand you two really carry the only opinions that matter legally on the other your father asked to be let off support. Ill tell you a story at my school our campus moniter is the most popular person there, he is caring, and will talk to you if he sees that something is wrong. Well it turns out that his mother was sick with brain cancer and had been going downhill for years but in the last two months had taken a serious nose dive. Anyway finnally his mother died and I went to comfort him and he told me that it was easier tolet her go then watch her suffer. He had had to make the DNR and DNH decisions and he knew that she didn't want to be in any pain any more so he let her go.

    I hope this helps...

    Syujin
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #8

    Apr 27, 2007, 06:27 PM
    OMG, all of you are so wonderful!!

    (((((((((((((em))))))))))))))

    ((((((((((((adore)))))))))))))

    (((((((((((((shy)))))))))))))

    ((((((((((ruby))))))))))))))

    This is by far the hardest time of my life. I usually try to help others, but right now I feel so... Damn, I can't even describe it right now.

    I have no one that even understands.

    Mom is in total denial. She keeps thinking of the Terry Schiavo case. She heard Dad tell her he was done, but she is not ready to let go.

    I just don't know what else to say right now.
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #9

    Apr 27, 2007, 06:35 PM
    Thanks Chuck. Yes, it is Dad's wishes, but he is still coherent and Mom is not ready to give up. They have been together over 50 years. She says as long as he is coherent then she can't sign the consent.
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #10

    Apr 27, 2007, 06:37 PM
    I guess this may be why I have been sounding a little aggrivated here lately, and I feel terrible about that!!

    I hate that I am taking out my frustrations here. That is why I finally decided to post this.
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #11

    Apr 27, 2007, 07:45 PM
    It is now time to write my "letter." A few weeks before my grandfather passed I wrote a long letter discussing all of the fun things that I remembered about him. He used to feed me butter out of a spoon (I know it is bad now, but that was almost 40 years ago) and all of my cousins laughed and said "he did that to you too?" LOL. We also played "crack the knuckles" The Polish equivalent, at least in my family of "pull mu finger" was played quite frequently.

    It took me about 3 weeks to write that letter to him, just to get everything out I ever wanted to say.

    It arrived the day he passed. About 2 hours after he passed. He was over 600 miles away from me also.

    When I got to Pittsburgh, to the funeral home, the letter was in his hands (you all don't understand how hard this is for me right now) and, the day of the funeral the letter was gone. My uncle was to give the eulogoy.

    When it was time for the eulogy my uncle said "no one can re-create my father's life than one of his grandchildren" and he read the letter I had written. All of my cousins laughed, it acutally was an amazing day

    Now I feel as though I am going through this all over again. However, this time Dad says that he is ready to go, but Mom won't let him. It is now up to me, my sister and brother to talk to her. But what do we do? What do we say? She is not ready to say goodbye, but he is. He is tired of suffering, he is tired of hurting? But Mom's hurting will really just beginning.

    What a horrible place to be in. What tremendous pain this brings.
    brazygirl08's Avatar
    brazygirl08 Posts: 74, Reputation: 9
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    #12

    Apr 27, 2007, 07:54 PM
    I am sure my mother and father know how you feel. My Grandfather (dads dad) and grandmother (moms dad) died within a year of each other. Two hard times. My grandma spent a long time in the hospital and my grandfather had a stroke one morning and was gone by night :( But with my fiance's granddad they told them he wouldn't make it past this time. His kidney's and liver were failing. So we took him off the machines and took him home... that is where he wanted to die. He lived a day and a half at home, went peacefully, died at home and with everyone he loved. Is this a choice for your family? I hope so because it is always better to die at home with family and not in a hospital on a bunch of machines. I wish you the best! Let us know. And if you need someone to talk to or vent more just come back here!

    Hugs
    Kristen
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #13

    Apr 27, 2007, 08:00 PM
    Yes, Brazy, it is a choice for our family, but I don't think Mom thinks that he is so close yet. She said to me today that as long as he is "coherent" that she cannot make a decision like this.

    Oh, I just noticed that your name is KRISTEN. That is my sister's name, but KristIn.

    Yes, I need to vent. I am usually the one here giving advice and help, but for once I am just at a loss.

    The pain of the decisions is horrendous!!
    AKaeTrue's Avatar
    AKaeTrue Posts: 1,599, Reputation: 272
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    #14

    Apr 27, 2007, 10:11 PM
    Hi J

    I'm so sorry for what you and your family are going through.
    I know this has got to be a painful time for everyone.

    I don't know of any advice to offer that hasn't already be said.
    I just wanted to let you know that my thoughts are with you.

    Kae
    grammadidi's Avatar
    grammadidi Posts: 1,182, Reputation: 468
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    #15

    Apr 28, 2007, 12:21 AM
    Hugs to you J_9,
    You surely are in a difficult place, and I ache for you. I do want to speak on this, and please remember that it is just my opinion, based on my own experiences.

    Even if your mom signed a DNR, if she really didn't believe in it I don't think your dad could let go. It is my belief that he will go when he knows (don't ask me how he will know - he just will) that his loved ones are ready to let go. I know it may sound horrible, but I believe the dying can't let go until all is well in the hearts of their loved ones. I also don't think that it would be good for your mother to try to push her to that decision. It has to come when she finds it within herself to be strong enough to let go.

    I do think that you can (and should) talk to her about it... in a loving, caring way. You can cry with her... wonder if he is just hanging on because he knows she isn't ready to let go. I so understand her not wanting to when he is coherent. Giving up on him must feel to her like she would be saying she didn't love him. You know... when your spouse is going through a rough time you think you should be able to help them. She must be feeling so helpless right now - much like you are feeling.

    I think I would talk to her about her own feelings. I would share mine, but more-so just try to get her to talking about her own. Empathize with her... love her... and, as difficult as it might be, let her come to her realization that she is ready to let him go on her own. If your dad is in too much pain, request they up his meds. But honestly, J_9, if he truly wanted to let go, he would.

    My heart aches for you, your family, your dad and especially your mom. I know that the moment I realized that my husband was just hanging on and going through all that pain for me, I knew I wanted him to let go. Almost immediately, he did. I didn't (and still don't) feel that I wanted him to hang on... I just couldn't let him go... until I reached that point that I knew it was what I wanted.

    I think if you let her come to it on her own she will be a lot stronger after he dies. This may be all that is holding her together right now.

    Warm hugs,
    Didi
    Allheart's Avatar
    Allheart Posts: 1,639, Reputation: 436
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    #16

    Apr 28, 2007, 12:33 AM
    Oh hello Beautiful J_9 -

    Many **hugs** to you. This time of our lives, to me, really defines are role and exsistence. At times the roles seem to reverse, or the line seems to not be so clear, but one thing is for sure, you ar J_9, the loving daughter, and Mom is Mom. As long as Dad is not suffering, allow Mom to be Mom and wife a little while longer.

    Not sure I would broach the subject with Mom. I would just gingerly ask questions, like, what does the doctors say? Questions, to bring Mom's thoughts back to reality of the situtation just a bit.

    This has to be one of the most difficult times of our adult life. When one of our parents is ill this way. But somehow we do get through. This is one of those times I say, follow your heart entirely and let God take care of all the rest.

    Oh how my heart is with you now J_9. I'm here for you now and always.

    Love,
    Allheart
    TheSavage's Avatar
    TheSavage Posts: 564, Reputation: 96
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    #17

    Apr 28, 2007, 01:11 AM
    I feel Great sorrow for you in your time of sadness.

    One thing you might want to ask your mom is what she would want you and your sister to do if it was her. -- Savage
    Bluerose's Avatar
    Bluerose Posts: 1,521, Reputation: 310
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    #18

    Apr 28, 2007, 05:19 AM
    RubyPitbull's Avatar
    RubyPitbull Posts: 3,575, Reputation: 648
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    #19

    Apr 28, 2007, 05:29 AM
    Very good idea Savage.

    J_9, the problem right now is that the hospital staff has done something that isn't very fair to you. You are hundreds of miles away without being able to be there for another couple of weeks because of all this stuff going on in your life, and they have added to your stress. They are putting you in a very untenable position via long distance, at the moment. Since you are in the healthcare field, you understand completely why they are doing this. They are on the frontlines right now and are reaching out to someone who they know will understand what they are saying. Their reasonings are from a financial and practical point of view. It is truly understandable. But, from an emotional point of view, dumping this on you right now, when you are so far away and cannot resolve this issue for them, is not fair of them, at all. You need to tell them that. You need to stay strong and tell them that when you get there, you will do what you feel is necessary, but at the moment, you cannot try to convince your Mother over the phone and you want to see and speak with your Father. Tell them they will have to "button it" and wait.

    I see that you are really worrying about what to say, how to handle your Mom. Savage has brought up something that needs to be said to her. Believe me, you WILL know what to say to your Mom once you see what is going on with your Dad for yourself.

    I understand perfectly what your Mother is saying. It is so hard to let someone go if they are coherent. She is torn with guilt over wanting this to be over, and that little spark of hope that maybe, just maybe, he might recover. As tired and drained as she is, she also doesn't want to let go because she can still have conversations with him. "Pulling the plug" is such an emotionally draining and intensely painful decision. The guilt that comes with this, the second guessing of one's self after it is done, is too much of a burden for most of us to carry. She is afraid. She is unsure. She is still able to converse with him. She doesn't understand the kind of pain and discomfort he is in. She believes if he was in such agony, he wouldn't be able to have a rational conversation with her. She thinks it is too soon. He may be telling her, when they are alone, that he is afraid. Since he has suffered from depression for most of his life, the fact that he wants to let go, may appear to be like a broken record to her. She will keep going back and forth with this in her mind, torturing herself with her indecision/decision until her entire family is around her. She may not be expressing it, but she needs you all there. She will definitely not do this until she is sure that he has had a chance to say goodbye to everyone and told everyone what he wants.

    So, understand that your Mother may be delaying this because she needs you all there, as much for her, to give her the strength, as she needs you there for him. When you get to the hospital and have spent time talking with your Dad, when you and your siblings have done the same, when you are all together, everyone will be able to discuss this. The best thing you can do is to have your Mom, and the rest of the family, in the room with Dad. When he is in one of his coherent moments, talk to him about the situation. Let him state in front of Mom, what he wants. He needs to tell her that he doesn't want to hang on like this anymore in front of everyone. If he is in pain, he needs to make her aware of that. You and your siblings need to guide the conversation so that there is no misunderstanding as to what he wants. Have the necessary paperwork on hand. Ask the doctor/staff to be available and ready to walk in when your Mom realizes/recognizes that this is his wish and she accepts it. Mom needs to see that no one will blame her , that all of her children are in agreement with her husband, and she should not feel guilty over this. She needs to be allowed to have the burden of this decision taken off her shoulders. The only way to do that is if you all are there. Everyone needs a chance to say their goodbyes. It just very well may be that she is holding off for this moment, but is too fearful, or guilt ridden, to express it. As a matter of fact, she may not consciously realize this is what she needs from all of you.

    I hope this helps.
    XXXXOOOOO
    Adoredevotion's Avatar
    Adoredevotion Posts: 44, Reputation: 1
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    #20

    Apr 28, 2007, 06:24 AM
    Just wanted to let you know that I am thinking of you during this difficult time. My prayers are with you. Try and take a deep breath and do what you can do to relax even if it is just for a moment. I have this feeling inside that when you get out to see your parents that you and your siblings will know what to say to your mother, as well as, your father. Keep venting though and letting us know how you are feeling and what is going on. The hardest thing for me when my father died was that I was being strong for everyone else I forgot to let someone else be strong for me. Trust that you are doing the right thing. If this sounds cliché I apologize but reading this helped me through my difficult time.

    -one night a man dreamed he was walking on the beach with the Lord. As scenes flashed before Him, He noticed that there were two sets of footprints in the sand. He also noticed at his saddest lowest times there was but one set of footprints...This bothered the man. He asked the Lord "Did you not promise that if I gave my heart to you that You'd be with me all the way? Then why are there but one set of footprints during my most troublesome times?" The Lord replied, "My precious child, I love you and would never forsake you. During those time of trial and suffering, when you see only one set of footprints, it was then that I carried you."


    Stay strong, smile a little for us and take care of yourself.

    Sincerely,
    Adoredevotion

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