Quality over Quanity

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pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
Well today was a good day for Jack, he even got up and helped his dad make breakfast, I figure it out it takes me a good 3 hours to get Jack started , he got a nice hot shower today and back rub that always makes him feel better, it is just so hard how each day changes from day to day, I told him today I will cherish days like this forever, He just held me all morning, it is such amazing feeling, I have reduced alot of Jacks meds, He was so sedated it was unbelieveable, I have cut his Klonopin totally out, and I asked them to increase his depression medication and it has actually made a good change in his mood, I understand hospice believes in heavy medication, but he still wants a good quality of live and he still has it in him, And he said he wants QUALITY OVER QUANITY so that is what he is getting, we have his pain level down to a 2-3 and the anixety totally undercontrol without him being sedated, We are looking forward to the weekend he wants to go to the beach one more time and and he wants one more jam session so all the band members are coming over Friday night, and they are going to play in the garage, ( not sure what the neighbors will think ) but this is Jack final Drum jam with the band, I am praying that we have several months with Jack, they tells us it could be weeks or months, We are thankful the cancer has not spreading rapidly in the past so we are holding on to that, As for my health it will have to stay on hold I cants seem to get my pressure under control today it was 150/102 and these Shingles are drivng me crazy. The only thing I am uncertain about it is like a double edge sword it is his steriods, we all know steriods will shut your body down at some time and he is on a very high dose but if we take him off his face will just keep swelling, which is not good either, His nose drains so bad and his mouth they believe the tumor is draining, and also the tumor is blocking alot of his glands so we are at a double edge sword with the steriods, his one eye is already close shut due to the swelling, I keep ice packs on it, and it seems to bring it down some, and of course we have the trachea blow outs ( that is what I call them ) it is where he gets a plug stuck, and the mess the blow out cause is unbelievable, Well lets see how the rest of the day goes,

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  • MichelleP
    MichelleP Member Posts: 254
    #2
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    I posted to you in the other
    I posted to you in the other thread about medications before I read this, so you're clearly checking it all already Patty. What a great care taker you are! I'm sure Jack is proud of you and loves you dearly.

    Things can change very quickly. One day they seem fine and the next their in a semi coma state and when that happens your blindsided and confused. That's why it's so important to say all the things you need to say "now".

    Please let us know how you and Jack are doing. We care!
  • pattynonews
    pattynonews Member Posts: 176
    #3
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    MichelleP said:

    I posted to you in the other
    I posted to you in the other thread about medications before I read this, so you're clearly checking it all already Patty. What a great care taker you are! I'm sure Jack is proud of you and loves you dearly.

    Things can change very quickly. One day they seem fine and the next their in a semi coma state and when that happens your blindsided and confused. That's why it's so important to say all the things you need to say "now".

    Please let us know how you and Jack are doing. We care!

    its getting harder
    Thing change within the same day he was so good, now he is just sleeping again, and we are having such a problem with the tumor leaking, from his nose and mouth, I am changing his nose plugs every half hour, and the smell is horrible I even seem to smell like it now, from cleaning it so much, and his trachea is bleeding alot, he starts coughing and that is it , there is blood everywhere that happen about once a day, I was scrubbing walls because it happens so fast even in his sleep and I can grab something that fast, I keep a bib on him for the drainage and I must go through 20 washcloths a day,I looked at my self in the mirror and I was just so shocked and upset of how bad I looked, I have not dyed my hair and it is pulled back in a pony tail and I have shingles, I apologize to Jack and told him I feel so bad that I look so bad, and he just told me I looked beautiful, Im afraid to go to sleep in case he starts choking, I use to be able to take something to sleep but Im afraid to take it, I think I am going to have to talk to his sister and tell her I need help, and I was just doing fine until one of Jacks friends just called and asked me how he was, I just broke down and started crying, Jack's balance is getting off too so it is just so much,
  • MichelleP
    MichelleP Member Posts: 254
    #4
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    pattynonews said:

    its getting harder
    Thing change within the same day he was so good, now he is just sleeping again, and we are having such a problem with the tumor leaking, from his nose and mouth, I am changing his nose plugs every half hour, and the smell is horrible I even seem to smell like it now, from cleaning it so much, and his trachea is bleeding alot, he starts coughing and that is it , there is blood everywhere that happen about once a day, I was scrubbing walls because it happens so fast even in his sleep and I can grab something that fast, I keep a bib on him for the drainage and I must go through 20 washcloths a day,I looked at my self in the mirror and I was just so shocked and upset of how bad I looked, I have not dyed my hair and it is pulled back in a pony tail and I have shingles, I apologize to Jack and told him I feel so bad that I look so bad, and he just told me I looked beautiful, Im afraid to go to sleep in case he starts choking, I use to be able to take something to sleep but Im afraid to take it, I think I am going to have to talk to his sister and tell her I need help, and I was just doing fine until one of Jacks friends just called and asked me how he was, I just broke down and started crying, Jack's balance is getting off too so it is just so much,

    Patty
    I said in another post that hospice was called in. Dear....they are there to help you too! They can send a nurse to spend the night so you can rest. I have xanax and refused to touch it for months also because I was afraid that if he needed me I wouldn't wake up quick enough. I had hospice nurses here for 5 or 6 of the 10 days we had them. They told me to take my xanex and lay down....plus they took my baby monitor from me because they knew I was sleeping with it next to my pillow at night. I still left the door open and listened to each and every sound of the nurses.

    I too broke down whenever anyone would call and ask how things were. No one....unless they have traveled this journey can understand. And Patty....I and many others here understand exactly how you feel and what you're living.

    (((((HUGS)))))
  • pattynonews
    pattynonews Member Posts: 176
    #5
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    MichelleP said:

    Patty
    I said in another post that hospice was called in. Dear....they are there to help you too! They can send a nurse to spend the night so you can rest. I have xanax and refused to touch it for months also because I was afraid that if he needed me I wouldn't wake up quick enough. I had hospice nurses here for 5 or 6 of the 10 days we had them. They told me to take my xanex and lay down....plus they took my baby monitor from me because they knew I was sleeping with it next to my pillow at night. I still left the door open and listened to each and every sound of the nurses.

    I too broke down whenever anyone would call and ask how things were. No one....unless they have traveled this journey can understand. And Patty....I and many others here understand exactly how you feel and what you're living.

    (((((HUGS)))))

    keeping in touch
    I have a my space page for jack that I post all his updates and pictures, ( if you would like to see it ( Jack Trevino - going down the gypsy road )and I did that because it was so hard for me to speak to all of these people calling about him, especially now I just start crying, so I tell them to go to the site and I can't believe they actually tell me they dont have time to go there, well my emotions cant handle all the phone calls right now, my phones will be turn off anyway on friday, becasue tmobile wont let me just turn one phone off and I cant afford to pay for two phones so I will have to get a new phone with one line, I know people are concern about Jack but talking about it and having to tell everyone yea he is on hospice and it could be weeks or months it just gets to me awhile, I ending up crying my self to sleep last night after that phone call, THe nice thing with the my space I blog every day and I print out all of the blogs so I have the last year in a book, the good , the bad but I will always have the memories, And his family and friends can go on everyday and see how Jack is doing,

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