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Thread: Caregiving for your GBM loved one

  1. #1

    Caregiving for your GBM loved one

    Just asking how all of you managed to care for your loved one with GBM?

    As a caregiver, were you always in the home? Seek out services? Get help? What would you do again or do differently?

  2. #2
    Senior User
    Join Date
    Apr 2014
    Posts
    241
    I can say I wouldn't change a thing we did and I have absolutely no regrets.
    My husband did well for several months with surgery and treatments. He had a stroke one year later and that was very different and very difficult. We moved to another state to a much smaller one level home. I did have children to help me. We had Hospice in the last week and I will say they were wonderful. I don't think there is one answer, it depends on so many things. The one thing I would say is do what is best for you and your family, having no regrets is a blessing.

  3. #3
    Super Moderator Top User
    Join Date
    Dec 2011
    Posts
    4,890
    We had three of us caregiving and while my sister was still functioning pretty well, we'd leave her alone at times for a couple days, but once she needed more care, one of us was always there. It was absolutely exhausting.

    If I had to do over I think I might have hired help, but as it was we were all too exhausted to do much more than look into it.

  4. #4
    Senior User
    Join Date
    Dec 2011
    Posts
    226
    My husband only live for 11 months from diagnosis. In the beginning I could leave him home alone, but I only did for short periods of time. The last 3 months we had hospice in place at home. I barely left his side during that time. Completely my choice. I was so focused on him, I didn't have time to think or care about my needs. I wouldn't have wanted it any other way, but we're all different. You need to do what feels right for you. Hospice was a Godsend for us.

  5. #5
    I was mostly home and last 6 months I was home with my husband 24/7. We did have hospice come to help me give him a bath. With us, he wanted me around all the time and I loved being around him since I knew his days were few. Toward the end I did see some sign of exhaustion within myself and so I would say, taking time for yourself even if its just 20 mins it does a world of difference. I wouldn't change anything, we did the very best we could.
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  6. #6
    Thank you everyone for your answers and support. GBM Sibling, you gave a very candid and human answer
    about being too exhausted to look into it. I'm beginning to feel that the "system" wants us to get worn down
    so we don't ask about other resources. And it is just flat out overwhelming. There are no perfect solutions
    for every problem.

    For me, I love spending all this time with my mother and know I will look back on it with no regrets. But, yes, it is
    exhausting and I can't remember what life was before when I didn't have to worry about anything but myself. Yet,
    I feel good that I can look in the mirror and know that we are trying every avenue that we can to keep her at home safely.

    When this is all over, I am thinking about writing a book about caring for loved ones at home, Medicaid planning and resources, etc.
    It is astounding what is out there yet most of us don't know about it until it is too late or we are not able to do it.

 

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