The first stage of hospice

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
The final word from the onoclogist today, They told us there is nothing they can do for Jack , all now is to keep him comforable and give him the best quality of what is left of his wonderful live They told us it could be months at the most, It was a very quiet ride home, So we in the first stage of hospice, We have to go through the process of switching out all his medical equipment, the nice thing is they deliver all meds and most all treatment it might do the nurse will come straight to the house, which is good because it is getting hard to take Jack out, Im praying we have months, but we just dont know, Im just numb now , and not sure what to expect I guess it is time to start reading all the books that I was given . I just dont know how to prepare for all of this, Jack still has those good days where he walks around the house, plays his video games, and enjoys getting those little presents I spoiled him with, but i know there will be a time this will also decline, I just always want him to remember me, and know that I will always love him, if anyone has an isight what I should except, I hear so many different things I hear some people can stay on hospice for months and months and then I hear that when people go on hospice alot of times they just give up and go fast, Jack still wants to fight till the end,

Patty

Comments

  • MichelleP
    MichelleP Member Posts: 254
    #2
    Patty
    My husband was on hospice for 10 days before his passing. It was suggested months ago but just the word "hospice" frightened my husband. So, on his last trip to the hospital (6 of them) and he came home, I told him the nurses were from "comfort care". It was 10 days and the nurses spent the night for 6 of them due to my fatigue. I can tell you that hospice cares just as much about you and they will Jack. The only thing I would change if I could would be the medications they gave him. It was too much I think. They said it was needed to due anxiety, and maybe in some part that's true, but I wish I had forced them to reduce the amount so that he could have been more alert. They gave my husband 2mg. haldol and morphine at 2ml. I wish I had cut that at least in half. Please talk to them about the amount they are giving....start small and then adjust if needed. Don't start on high doses like we did. Even losing 5 minutes of time with your loved one matters.
  • trish07
    trish07 Member Posts: 138
    #3
    A Higher Purpose....
    I'm so sorry to hear about Jack. I have been reading all of your postings and you and Jack have weighed heavyly on my mind for the past several days. Your love for Jack could never be questioned...know and believe in your heart that he cherishes and feels your love every moment.

    I do visit your and Jacks "Myspace" on a regular basis to read your most current blogs. I watched Jacks video...he does love his incense! I hope that Jack is alert enough to enjoy the celebration of his life tonight...you two are so blessed to have each other.

    I do believe in my heart Patty that there was a reason that you and Jack were brought together...sometimes we do not understand the "gifts" we are given or why. There is a beautiful song called "Calling All Angels" by Jane Siberry that touches my soul every time I hear it. It came to mind when you said you were going to make this the best time of Jacks life and cherish everyday that you have left.

    My husband and I were married 2 years ago...we have been battleing his cancer for the entire 2 years...I truely believe that we were brought together for a "Higher Purpose" that I do not understand now...but will one day be revealed...I do however know that I have been forever changed.

    You are Jacks Angel and he is yours...a higher purpose...forever changed.

    Trish
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Together
    We are all together in this fight. As you probably know, my husband is also on Hospice. They really are there to help both the caregiver and the patient. I made a call to them this morning because I was just overwhelmed. It is hard to accept that nothing else can be done and that we are fighting for quality of life over quantity. We had always expected to eventually come to this point, but that doesn't make it any easier.

    I would agree that it's important to watch the amount of meds that are given. We decided on our own to cut back on the morphine today. My husband didn't like feeling totally out of it. They tell us that it will help him breathe easier, but he actually seems better now. We have moved his chair and I have requested a hospital bed. He has been sleeping in his chair. We are having one of our bathrooms remodeled. He had to go down a few steps to get to the remaining bathroom. He fell doing that, and I had to call the fire department to help get him up. Now we are camped out in my mom's room which is next to the bathroom. My sister has my mother for now.

    We had our last trip together to Yosemite. It is beautiful with all the fall colors. We stayed at the Ahwahnee Hotel because my husband said he had always wanted to do that. We probably should have gone sooner because he slept much of the time. Using the wheelchair and oxygen made things a bit difficult. We had a beautiful room, though, and the view was incredible.Our church did a "bucket list" collection and gave us money to help with the expenses. That was a nice surprise. Fay
  • mr steve
    mr steve Member Posts: 285
    #5
    thoughts and prayers
    Patty,

    You will be in our thoughts and prayers today and every day.

    Steve
  • mrsgeb
    mrsgeb Member Posts: 32
    #6
    Hi Patty,
    Even though I am
    Hi Patty,

    Even though I am new to this site, I am not new to being the primary caregiver for my husband or new to hospice. My husband has been on hospice for 10 months. While it was hard ot navigate in the beginning, I learned that when we didn't like something to say it. In fact, the first RN they assigned to my husband was a brash, pushy woman who basically wanted to run our lives. That was not going to work for us, so we told the hospice director exactly what the problem was and a new RN was assigned and has been with us ever since. She is an angel!

    My husband by no means "gave up" when he went on hospice. He was given only 3 to 6 months back on December 19, 2008 and he fooled them! Here it is 10 months later. All I can tell you is that my husband's hospice team has not only helped us with the medical, they have helped us with the emtional roller coaster a diagnosis like this brings. These people are like members of our family and treat both of us with dignity and respect, and love.

    Please read all the information that hospice gives you so that you know your rights and don't be afraid to ask questions, demand things if necessary, but most of all take advantage of all they have to offer.

    My prayers are with you.
  • pattynonews
    pattynonews Member Posts: 176
    #7
    mrsgeb said:

    Hi Patty,
    Even though I am
    Hi Patty,

    Even though I am new to this site, I am not new to being the primary caregiver for my husband or new to hospice. My husband has been on hospice for 10 months. While it was hard ot navigate in the beginning, I learned that when we didn't like something to say it. In fact, the first RN they assigned to my husband was a brash, pushy woman who basically wanted to run our lives. That was not going to work for us, so we told the hospice director exactly what the problem was and a new RN was assigned and has been with us ever since. She is an angel!

    My husband by no means "gave up" when he went on hospice. He was given only 3 to 6 months back on December 19, 2008 and he fooled them! Here it is 10 months later. All I can tell you is that my husband's hospice team has not only helped us with the medical, they have helped us with the emtional roller coaster a diagnosis like this brings. These people are like members of our family and treat both of us with dignity and respect, and love.

    Please read all the information that hospice gives you so that you know your rights and don't be afraid to ask questions, demand things if necessary, but most of all take advantage of all they have to offer.

    My prayers are with you.

    you give me hope
    Our nurse seems to be very nice and she is straight forward too, If I can ask does your husband sleep alot It would me amazing if I could have Jack 10 months from now, They gave me a little blue book to read which was very hard, Jacks sister has given me many books about dying and what expect as the caretaker but I cant seem to pick them up,It is like I am afraid to know, I had this fear when they brougt hospice in like this is the end and at times I still feel afraid, I even start crying when I hear that word and Jack in the same sentence, just some how try and focus, Im so scared all the time, Is it just me or are there other people out there like me!!!!
  • MichelleP
    MichelleP Member Posts: 254
    #8
    pattynonews said:

    you give me hope
    Our nurse seems to be very nice and she is straight forward too, If I can ask does your husband sleep alot It would me amazing if I could have Jack 10 months from now, They gave me a little blue book to read which was very hard, Jacks sister has given me many books about dying and what expect as the caretaker but I cant seem to pick them up,It is like I am afraid to know, I had this fear when they brougt hospice in like this is the end and at times I still feel afraid, I even start crying when I hear that word and Jack in the same sentence, just some how try and focus, Im so scared all the time, Is it just me or are there other people out there like me!!!!

    Patty
    I'm so sorry that you're having such a hard time and I can certainly relate to your feelings having just lived it myself. All the books in the world that tell you what to watch out for in the end are different....each person passes differently. Just rely on your instincts and go from there. My husband had very few of the symptoms they described.

    God Bless both you and Jack my dear. Return here often and let us know how you're both doing. There are so many people here who follow your story and truly care....including myself.

    (((HUGS)))
  • mrsgeb
    mrsgeb Member Posts: 32
    #9
    pattynonews said:

    you give me hope
    Our nurse seems to be very nice and she is straight forward too, If I can ask does your husband sleep alot It would me amazing if I could have Jack 10 months from now, They gave me a little blue book to read which was very hard, Jacks sister has given me many books about dying and what expect as the caretaker but I cant seem to pick them up,It is like I am afraid to know, I had this fear when they brougt hospice in like this is the end and at times I still feel afraid, I even start crying when I hear that word and Jack in the same sentence, just some how try and focus, Im so scared all the time, Is it just me or are there other people out there like me!!!!

    I know exactly
    what you are going through. I go through every emotion that you are experiencing everyday. It takes some time to deal with it all....it has been my experience that you do sort of "get it together" for lack of a better way of saying it. Don't be hard on yourself, you really need to let it out, and if crying is the way you let it out, then by all means sweetie cry all you want! It is scary...not knowing what to expect from one day to the next.

    As for the books....I beleive I wasn given that same little blue book from hospice..is it called Gone From My Sight? Also, some very well meaning people have given me other books, but I haven't touched a single one of them...I don't really know why....just don't want to go there I guess.

    Yes, my Gary sleeps a lot, but not for long periods of time. Gary will maybe sleep for two hours and then be awake for two hours. He will just fall asleep in the middle of a conversation, or while eating!

    You should always have hope.....never give that up! I pretty much live on it and try really hard to remain positive and hopeful with Gary. Of course he has seen me cry over this, but my strongest emotion has been anger. We all deal with things diffrently and there is no wrong way for you to feel or deal with it. Just know that everyday you will be more in control of your emotions and that will allow you to spend peaceful time with Jack.

    Please let me know how you are doing today and if you were given the same little blue book.

    Sherry
  • pattynonews
    pattynonews Member Posts: 176
    #10
    mrsgeb said:

    I know exactly
    what you are going through. I go through every emotion that you are experiencing everyday. It takes some time to deal with it all....it has been my experience that you do sort of "get it together" for lack of a better way of saying it. Don't be hard on yourself, you really need to let it out, and if crying is the way you let it out, then by all means sweetie cry all you want! It is scary...not knowing what to expect from one day to the next.

    As for the books....I beleive I wasn given that same little blue book from hospice..is it called Gone From My Sight? Also, some very well meaning people have given me other books, but I haven't touched a single one of them...I don't really know why....just don't want to go there I guess.

    Yes, my Gary sleeps a lot, but not for long periods of time. Gary will maybe sleep for two hours and then be awake for two hours. He will just fall asleep in the middle of a conversation, or while eating!

    You should always have hope.....never give that up! I pretty much live on it and try really hard to remain positive and hopeful with Gary. Of course he has seen me cry over this, but my strongest emotion has been anger. We all deal with things diffrently and there is no wrong way for you to feel or deal with it. Just know that everyday you will be more in control of your emotions and that will allow you to spend peaceful time with Jack.

    Please let me know how you are doing today and if you were given the same little blue book.

    Sherry

    at peace
    yea I was given the famous little blue book and I cried through the whole thing, As for the dying book I too hav not picked them up but my heart is not telling me to read books about heaven and the experence I am reading embraced by the light right now, and Im going to the book store tomorrow, I want to know what Jack is going to be experience I need that And it between reading that book I also am reading TOMMYLAND ( The story about Tommy Lee the famous drummer from Montley Crue ) because Jack is a drummer, but something is pushing me to read the heaven books, Its a feeling I have, I did go outside yesterday and feed the birds for the first time ( the birds were sure Happy ) and I sat outside last night with my ipod and listen to our favorite songs and of course the first song that came on is ( SEE YOU ON THE OTHER SIDE BY OZZY OSBOURNE ) and I lit an incent for Jack and just sat there and watch the clouds, Jack is native american and believes in all the incent burning and sage smudging so I figure I would continue , It is getting harder and harder every day, he can barely write anymore, he just touches his heart and then my which means I love you ad its getting hard for him to walk ,it break my heart to see him, and I know it is going to get harder that is why I need to read the books about heaven so I know Jack will be at peace ,

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