Turn for the worse--update

karenbeth
karenbeth Member Posts: 194
in Caregivers #1
Unfortunately, the bad news kept on coming yesterday. He didn't have to have the lumbar puncture b/c the MRI showed the cancer had spread aggressively throughout his brain--and these were new, large lesions that weren't there on the MRI he had about a month ago. There is nothing else they can do. They give him only weeks--maybe a month. I took him home last night and set up home hospice.

He is hallucinating and we had a few scary moments yesterday evening. He thought he was being attacked by an intruder and was trying to escape--I had to wrestle him to the ground until he calmed down. I am trying to get a crisis care aide for the weekend before the regular home health aide and other hospice stuff kicks in on Monday. Otherwise we will muddle through on our own. I have Haldol to give him when needed. He is calm and sleeping now.

I know a lot of you have been through this and now it's my turn. I will find the inner resources, like you all have, to deal with it. I broke down last night and probably will again, but right now I am relieved that we have a plan and supports in place. I just have to figure out how I can go to work for 1 day next week to get things in place while I take a leave of absence.

Thank you all for your wishes--we still need them, for a painless and peaceful journey.

Karen

Comments

  • luz del lago
    luz del lago Member Posts: 449
    #2
    Sending you wishes for
    Sending you wishes for strength and comfort. Yes, rely on hospice to assist at this time. Take small breaks for yourself. Perhaps hospice can be there while you go to work and get things in order. Eat small meals, drink water and catch rest whenever you can.

    Sadly, many of us know what you are going through. You are not alone. Come here when you can, share with us what you are feeling. There will always be a shoulder to cry on, a sympathetic ear, and many, many wishes and prayers being sent your way.

    Take care.

    Lucy
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #3
    Praying for you both
    I'm lifting you up in prayers right now. Just keeping putting one foot in front of the other, get rest when you can, and focus on the blessing of being able to help with the passage into God's presence. Call work and tell them you won't be in. I thought that I was taking FMLA prematurely, but in reality, it was not a moment too soon. Believe me, they'll understand. you'll be in my thoughts and prayers.
    Penny
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #4
    Take a deep breath
    Yes, this blows, and yes, it's going to be tough. You can make it. The best advice I can give you is to remember everything. Utilize hospice as much as possible and see if you can get the hospice intake nurse to expidite a Home Health Aide for you. Take it one thing, one hour, one minute at a time as going farther will only give you an anxiety attack. OK, it did me anyway.

    Breath deep. I'll sending all the happy thoughts I can.
  • karenbeth
    karenbeth Member Posts: 194
    #5
    mswijiknyc said:

    Take a deep breath
    Yes, this blows, and yes, it's going to be tough. You can make it. The best advice I can give you is to remember everything. Utilize hospice as much as possible and see if you can get the hospice intake nurse to expidite a Home Health Aide for you. Take it one thing, one hour, one minute at a time as going farther will only give you an anxiety attack. OK, it did me anyway.

    Breath deep. I'll sending all the happy thoughts I can.

    I know you all know...
    ...what I am going through.

    Thank you Lucy, April and Penny for your words. Lucy, I believe my husband was diagnosed a couple of months after yours, and they kind of followed the same path. April, anxiety attacks are my specialty. Penny, I know you went through a lot with your husband.

    This weekend was calm, for both of us. One day at a time. I am honored to be able to do this for him.
  • neverquit
    neverquit Member Posts: 220 Member
    #6
    My heart goes out to you
    My heart goes out to you Karen. You're right, many of us here know almost exactly what you are going through. As the others have said, please take it one step at a time and PLEASE make sure you take care of yourself as much as possible. PLEASE accept the help of others or ask for help from friends/family/Hospice. Breaking down is normal (at least it was for me) and helped rather than trying to keep it bottled up inside.

    I will pray for a peaceful and painless journey for you and for your continued inner strength.

    Dina
  • lovingwifedeb
    lovingwifedeb Member Posts: 183
    #7
    Karen, A Prayer for Your Husband
    Every day admit me
    Please
    Into the portal of the
    Divine
    Allow me to feel
    The sublime majesty of life
    To know
    The sanctity of relationship
    To touch
    The beauty of Earth
    Breathe into this poor undeserving frame
    An immortal telling
    A lasting consequence
    Give me the power
    To see
    To believe
    To dream
    Forever.

    (Poetry Soul To Soul)

    Deb
    lovingwife to Bob, stage 4 melanoma
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #8
    thinking and praying for
    I'm thinking of and praying for both of you, Karen. I am sorry you are having to go through this, pray it lasts just long enough and that neither of you suffer too much.

    Please continue to let us know how it going.

    Hugs.
  • luz del lago
    luz del lago Member Posts: 449
    #9
    Noellesmom said:

    thinking and praying for
    I'm thinking of and praying for both of you, Karen. I am sorry you are having to go through this, pray it lasts just long enough and that neither of you suffer too much.

    Please continue to let us know how it going.

    Hugs.

    A hug for you...
    You and your husband are in my heart, thoughts and prayers. May peace surround you in this time. Take care.

    Lucy
  • hope0310
    hope0310 Member Posts: 320
    #10
    luz del lago said:

    A hug for you...
    You and your husband are in my heart, thoughts and prayers. May peace surround you in this time. Take care.

    Lucy

    You know my
    You know my thoughts.....posted on LC.

    Take care..
  • tanker sgv
    tanker sgv Member Posts: 124 Member
    #11
    hope0310 said:

    You know my
    You know my thoughts.....posted on LC.

    Take care..

    First, let me tell u that u
    First, let me tell u that u are already one step ahead of the game. It really touched me that u said you felt honored to be there to help ur husband through this process. It wasn't until after for me to realize what an honor it was to help my mom. I too had my mom at home, she was done with being in hospitals.
    Second, relie on hospice to as much as u need. They are wonderful people who can look at ur situation from an outside perspective and provid u with the knowledge for the new phase of treatment u have been put in.. remember that in this stage the focus is on comfort and spiritual treatment. One thing a nurse told me once was "the nice thing about ur mom being home is u get to control how much she needs to be comfortable. " as family caregivers we are not bound by the same rules as a RN. If u offer meds, food, or water to your husband and he refuses just say okay and don't argue the patient knows what they need more then we do. Arguing only makes the agitation and hulusinations worse. If it gets bad again where u wind up wrestling him to the floor try to always keep ur hands moving in a rubbing manner so he doesn't feel like u r holding him against his will and no matter what keep a calm voice . I hope my advice helps and feel free to ask me anything, like u said unfortunately we have been there. You will be in my thoughts and check out my profiles expressions page there is a poem I wrote when I was where ur at, it helped remind me that there is a bigger picture then r human eyes can see.
  • 3Mana
    3Mana Member Posts: 811
    #12
    karenbeth said:

    I know you all know...
    ...what I am going through.

    Thank you Lucy, April and Penny for your words. Lucy, I believe my husband was diagnosed a couple of months after yours, and they kind of followed the same path. April, anxiety attacks are my specialty. Penny, I know you went through a lot with your husband.

    This weekend was calm, for both of us. One day at a time. I am honored to be able to do this for him.

    Been there
    Karen,
    As you can see, we've all gone down this awful road. It isn't easy, but I'll pray that things go peacefully & that your husband doesn't suffer. He's gone through alot already.
    There are alot of us you can lean on for support cause we understand what you're going through. Enjoy every minute, hour & day that you have with him. Carole
  • debbieg5
    debbieg5 Member Posts: 167
    #13
    final steps
    karen,
    sorry to hear about the bad news. Glad that you are going to have some help. I hope your husband has some lucid moments so that you can express your feelings with each other. Don't delay in doing it. You never know what the next day (or moment) may bring. We thought my husband still had time to fight the fight but the end came swiftly and traumatically. there were so many things left unsaid and that hurts the most.
    I pray that God will give you the strength you need to get through whatever time is left. we are all here to help you. Stay in touch.
    debbie
  • here4lfe
    here4lfe Member Posts: 306 Member
    #14
    Wishing you Well
    The pain in your writing is heartbreaking. Glad you have hospice, but sad you are at this point.

    Take care

    Best
  • karenbeth
    karenbeth Member Posts: 194
    #15
    tanker sgv said:

    First, let me tell u that u
    First, let me tell u that u are already one step ahead of the game. It really touched me that u said you felt honored to be there to help ur husband through this process. It wasn't until after for me to realize what an honor it was to help my mom. I too had my mom at home, she was done with being in hospitals.
    Second, relie on hospice to as much as u need. They are wonderful people who can look at ur situation from an outside perspective and provid u with the knowledge for the new phase of treatment u have been put in.. remember that in this stage the focus is on comfort and spiritual treatment. One thing a nurse told me once was "the nice thing about ur mom being home is u get to control how much she needs to be comfortable. " as family caregivers we are not bound by the same rules as a RN. If u offer meds, food, or water to your husband and he refuses just say okay and don't argue the patient knows what they need more then we do. Arguing only makes the agitation and hulusinations worse. If it gets bad again where u wind up wrestling him to the floor try to always keep ur hands moving in a rubbing manner so he doesn't feel like u r holding him against his will and no matter what keep a calm voice . I hope my advice helps and feel free to ask me anything, like u said unfortunately we have been there. You will be in my thoughts and check out my profiles expressions page there is a poem I wrote when I was where ur at, it helped remind me that there is a bigger picture then r human eyes can see.

    tanker sgv
    Thank you for your words and your advice. Fortunately the active hallucinations have abated--maybe because of the medications, maybe because he is home. I hope they don't come back but if they do I will be okay.

    Karen
  • OTIS2009
    OTIS2009 Member Posts: 4
    #16
    Karen,
    My heart really go's
    Karen,

    My heart really go's out to you, I have been there. I am sending you hugs, prayers, anything to get you through this rough time.
    I don't know you, but I know what your feeling.

    Hugs oxxo

    Tracy
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #17
    Thoughts and prayers
    This is such a difficult time and there is no way around it. Having a plan is helpful. Falling apart is what we have to do now and then. Take care. Fay

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