My father nearing death.. please help

mgirl05
mgirl05 Member Posts: 2
in Brain Cancer #1
I have been looking all over for some sort of comfort and understanding. I am 23 years old and I have a father that is dying of lymphoma in the brain. He has had it since 2007, but has recently had a new tumor that is inoperable and that is doing an extreme amount of damage. It has grown tremendously in the past 3 weeks, and it is having severe effects that I am not used to. His short term memory is gone, as well as his motor skills. His speech is getting worse and his personality is just not the same. I know the end is near, and I would just like to know anything and everything I can to deal with it (besides the usual: say your peace, tell him you love him, blah, blah , blah.) I'm also worried about my mom. Any advice on how to help her is welcome. Thanks if advance, M

Comments

  • Beckymarie
    Beckymarie Member Posts: 357
    #2
    Been there
    First, I am sorry for what you are going through. Lost my husband of 32 yrs to GBM IV last June and it has been a very painful journey. He fought this monster for 15 months. At some point you all have to realize that the end is near and have to try and make some kind of peace with it. I know how lame that sounds but when my husbands tumor was advancing to various areas of his brain we had to accept it was time to stop treatment, take him home, make him as comfortable as possible and spend all our time with him. My children and I spent every minute with him, even brought mattresses down to the family room and slept around his bed.

    This is going to be very difficult for all of you. You and your mom need to support each other while trying to find a "new normal" in your individual lives. Grieving is truly a process, a long process and it sucks. There are no shortcuts. I have attended counseling and several support groups. They help. I don't know if any of this helps. I am told that time is a healer...I hope that is correct.
  • palmyrafan
    palmyrafan Member Posts: 396
    #3
    Loss
    I am so sorry you are going through this with your parents. It is not easy.

    My mother-in-law (MIL) died three years ago of bone cancer that had spread from breast cancer. She had a double mastectomy years before and everyone thought that was the end of it. Little did we know that she was hiding the severity of the bone cancer from us (she lived in L.A., we on the east coast). She was here October of 2008 and she appeared to be in great health. She was dead by February.

    My point is this. My husband still has not come to terms with losing his mother; he misses her terribly. His father and sister are long passed and it was just the two of them and they were very close. It will take time for you to go through the natural grieving process. There will be the usual denial, anger, grief, acceptance, etc. over and over again. But until your dad passes, spend as much time with him as you can. Talk to him as you normally would. Just because his short term memory has been affected doesn't mean he doesn't enjoy hearing your voices talk about "remember when"?

    Believe it or not, your instinct will kick in and you will know what to do and say when the time comes. Just being there for your dad will mean more to him than you will ever know.

    You are in my prayers.

    Peace.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #4
    peace
    May our good Lord give you a peace that surpasses understanding. Love him, love your mom, and love yourself.
  • stonybrook66
    stonybrook66 Member Posts: 8
    #5
    brain cancer
    Hi, my Dad was diagnosed with GBM inoperable brain tumor, and I just wanted to let you know you are not alone. I am so scared for my father, but even more scared for my mom. They have been together for nearly 50 years and are best friends, life partners, etc. Mom's entire life has revolved around my dad and I don't know how she is going to be when he is not here anymore. I don't have any answers, but understand where you are at and feel your pain and anguish.
  • katiegro
    katiegro Member Posts: 3
    #6
    Primary CNS Lymphoma - Brain Cancer
    My mom was recently diagnosed, and it has been very difficult for me to cope with the prognosis. Her short term memory was attacked by the tumor that is inoperable. She is receiving chemo treatments at Sloan and so far the treatment is helping but prognosis is unknown.

    I have reached out the therapy because I know that I can not do it alone. I am writing a journal. I am reading books-- one book I found that was helpful was Dr. Remen's Kitchen Table Wisdom.
  • stonybrook66
    stonybrook66 Member Posts: 8
    #7
    You are not alone
    We are all reading posts and responding to posts because we all share something in common. My Dad was diagnosed on February 7, 2011 with GBM and lost the battle on July 7, 2011. I haven't been on this web site since his passage. Was too short, not enough time, never enough time left with the people we love, when we know we are losing them. I had too many questions left unanswered, too many things I still need my Dad here with me for. He continues to be my hero and my inspiration, but the loss is huge, the sadness and void is so painful. I understand about worrying about your mother. My parents were each other's everything. They were best of friends, lovers, partners, in everything they did. When Dad passed away, a huge piece of my Mom went with him. Be there for her, cry with her, give her space when she asks for it or needs it. I don't know if a sense of normalcy will ever return to our lives, but I pray it will get easier with time, for each and every one of us. In light and love.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #8
    stonybrook66 said:

    You are not alone
    We are all reading posts and responding to posts because we all share something in common. My Dad was diagnosed on February 7, 2011 with GBM and lost the battle on July 7, 2011. I haven't been on this web site since his passage. Was too short, not enough time, never enough time left with the people we love, when we know we are losing them. I had too many questions left unanswered, too many things I still need my Dad here with me for. He continues to be my hero and my inspiration, but the loss is huge, the sadness and void is so painful. I understand about worrying about your mother. My parents were each other's everything. They were best of friends, lovers, partners, in everything they did. When Dad passed away, a huge piece of my Mom went with him. Be there for her, cry with her, give her space when she asks for it or needs it. I don't know if a sense of normalcy will ever return to our lives, but I pray it will get easier with time, for each and every one of us. In light and love.

    Your Dad
    I am so sorry to hear about your Dad, I know it is getting harder and harder for me to go on here now. My sister is on hospice and my world is shattered....Having a really hard time finding a reason to get my self out of bed each day...
  • micgrace
    micgrace Member Posts: 131
    #9
    4theloveofmysis said:

    Your Dad
    I am so sorry to hear about your Dad, I know it is getting harder and harder for me to go on here now. My sister is on hospice and my world is shattered....Having a really hard time finding a reason to get my self out of bed each day...

    Yes its hard. You will need
    Yes its hard. You will need all the strength and encouragement as the end draws near. I have been there, its very unpleasant but necessary to be there. Your sister certainly put up quite a fight. That you should forever remember.
  • connsteele
    connsteele Member Posts: 232
    #10
    4theloveofmysis said:

    Your Dad
    I am so sorry to hear about your Dad, I know it is getting harder and harder for me to go on here now. My sister is on hospice and my world is shattered....Having a really hard time finding a reason to get my self out of bed each day...

    Prayers for you
    So sorry to hear that your sister is on hospice. I pray that both you and she can find peace. Your experience could one day help those of us who may have to go down the same path, so I hope you stay connected to this site. BTW: does your sister have GBM or AA3? And when was she diagnosed? It's been almost six months since our son was diagnosed. He has an MRI next week, which will be a real marker for how things are going. I am braced for anything as his has been diagnosed as high-grade: the one three weeks after finishing radiation showed mixed results, as in good and bad.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #11
    connsteele said:

    Prayers for you
    So sorry to hear that your sister is on hospice. I pray that both you and she can find peace. Your experience could one day help those of us who may have to go down the same path, so I hope you stay connected to this site. BTW: does your sister have GBM or AA3? And when was she diagnosed? It's been almost six months since our son was diagnosed. He has an MRI next week, which will be a real marker for how things are going. I am braced for anything as his has been diagnosed as high-grade: the one three weeks after finishing radiation showed mixed results, as in good and bad.

    my sister
    My sister has gbm 4 she was diagnosed Feb 22 2011. Hospice was not my choice. I didnt think it was time. She was told to make a choice to have the surgery they would not let her have back in Feb or try the temador one more time. There were so many delays all the way through this bad road that we are on. Then the day before she was suppose to tell them what she wanted to do she had a seizure. They gave her a lot of ativan that she doesnt do well with. The long seizure and the ativan did a number on her along with the doctors talking about her death as if she didnt know what was going on. She was fixated that she was going to die. A doctor and the lady with the HOT PINK DNR came in and said this was the tumor and the time was near. I questioned it, talked her children in to seeing if when the ativan cleared she might clear. So they agreed, she cleared and the next thing I know they are taking her home on hospice.I having a hard time with this if you cant tell. I thought it was to soon. They take away a lot of meds and dont care if you eat.Give you a lot of morphine. My God her tumor is 2.5 x 3 cm. A lot of tumors are found at that size. The doctor said we could stay in the hospital and get antibotics for the infection she had and do nothing about the cancer and maybe have 6 months or go home on hospice and it maybe days to weeks. My heart is broken...I didnt pick this cancer I didnt pick hospice and I dont want to lose my sister.I just want to wake up from this nightmare PLEASE !
  • micgrace
    micgrace Member Posts: 131
    #12
    4theloveofmysis said:

    my sister
    My sister has gbm 4 she was diagnosed Feb 22 2011. Hospice was not my choice. I didnt think it was time. She was told to make a choice to have the surgery they would not let her have back in Feb or try the temador one more time. There were so many delays all the way through this bad road that we are on. Then the day before she was suppose to tell them what she wanted to do she had a seizure. They gave her a lot of ativan that she doesnt do well with. The long seizure and the ativan did a number on her along with the doctors talking about her death as if she didnt know what was going on. She was fixated that she was going to die. A doctor and the lady with the HOT PINK DNR came in and said this was the tumor and the time was near. I questioned it, talked her children in to seeing if when the ativan cleared she might clear. So they agreed, she cleared and the next thing I know they are taking her home on hospice.I having a hard time with this if you cant tell. I thought it was to soon. They take away a lot of meds and dont care if you eat.Give you a lot of morphine. My God her tumor is 2.5 x 3 cm. A lot of tumors are found at that size. The doctor said we could stay in the hospital and get antibotics for the infection she had and do nothing about the cancer and maybe have 6 months or go home on hospice and it maybe days to weeks. My heart is broken...I didnt pick this cancer I didnt pick hospice and I dont want to lose my sister.I just want to wake up from this nightmare PLEASE !

    Its a horrible nightmare for
    Its a horrible nightmare for sure. I remember my wifes stay and your words bring so many tears to my eyes. I would love for you to wake up to get out of the nightmare anything any which way. This disease is so indescribably cruel to the person with it and everyone associated with it.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #13
    micgrace said:

    Its a horrible nightmare for
    Its a horrible nightmare for sure. I remember my wifes stay and your words bring so many tears to my eyes. I would love for you to wake up to get out of the nightmare anything any which way. This disease is so indescribably cruel to the person with it and everyone associated with it.

    was having a bad night
    I was having a bad night when I wrote my last reply.... I remember all of your posted and prayed and hoped with you. I droped many tears too for you as your sweet Grace lost this battle.
  • I_Promise
    I_Promise Member Posts: 218 Member
    #14
    4theloveofmysis said:

    was having a bad night
    I was having a bad night when I wrote my last reply.... I remember all of your posted and prayed and hoped with you. I droped many tears too for you as your sweet Grace lost this battle.

    4theloveofmysis
    I always have been following your posts. Because you love your sister as much as I love mine. I feel like you that my sister is my world, my everything, that without her I would not want to go on. Kat and I are both lucky that we have amazing men in your life that are there for us and love us. But there is a special bond between sisters. She is my best friend and I would do anything to have her tumor instead of her.

    Is it really too late to take your sister out of hospice? For the surgery? Like you said it is 2.5x3cm! And you are an oncology nurse. What about UCLA? They take the tumor out and make a personal vaccine out of it (dendritic cells)?

    I am rambling... I am not there with you, so I don't know... But I am crying for your sister too.

    Julia
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #15
    I_Promise said:

    4theloveofmysis
    I always have been following your posts. Because you love your sister as much as I love mine. I feel like you that my sister is my world, my everything, that without her I would not want to go on. Kat and I are both lucky that we have amazing men in your life that are there for us and love us. But there is a special bond between sisters. She is my best friend and I would do anything to have her tumor instead of her.

    Is it really too late to take your sister out of hospice? For the surgery? Like you said it is 2.5x3cm! And you are an oncology nurse. What about UCLA? They take the tumor out and make a personal vaccine out of it (dendritic cells)?

    I am rambling... I am not there with you, so I don't know... But I am crying for your sister too.

    Julia

    Julia
    I know I follow your posts too. I think she is now to weak for surgery...Im just so heart broken...
  • I_Promise
    I_Promise Member Posts: 218 Member
    #16
    4theloveofmysis said:

    Julia
    I know I follow your posts too. I think she is now to weak for surgery...Im just so heart broken...

    the pain
    I am so so sorry. She knows how much you love her. One day you will laugh again but you will never be the same.

Discussion Boards