• jbrw's Avatar

    jbrw shared an experience

    Loss (Lost loved one): My sweet brother Michael died on May 17, surrounded by people who loved him. He was peaceful and comfortable. This journey began 9 months ago; been through surgery, chemo and radiation, and finally hospice. It has been an emotional roller coaster, and there were many times where I was angry, frustrated, stressed out, and trying not to lose patience with Michael's antics and rebellion against losing his independence and his privacy. Yet, with his occasional comments about what he was facing, he taught me how to deal with his impending death, and how to be with him until then. We spent good time together the last several months, and I will always treasure them.

    To those who are going through the same journey, I would just say to do the best you can....you can't control the disease, you can't prevent the bad days. Try to provide a warm and supportive surrounding as best you can. Accept help, and ask for help. Be open to mysterious "coincidences". Take care of yourself -- you won't be any good if you're sick, exhausted, drained or out of patience. If it looks like hospice is in the cards, get it as soon as you can -- don't wait until you "need" it. They are wonderful and comforting, and only do what you need when you need it. Getting to know you and your loved one sooner rather than later helps immensely as you go through this time.

    Daily life gets in the way, but other people can and are willing to help deal with meals, laundry, etc. Only you can concentrate on being with your loved one, and try not to let the details get in the way. As a "doer" with lists of thing to do, this was a most important lesson for me.

    Thanks to everyone for sharing their journeys here; it has been a source of information and comfort to me.

    2 Comments
    • DaveWaz's Avatar
      DaveWaz

      Our thoughts are with you, I'm so sorry for your loss. Please know we are here for you.

      over 4 years ago
    • DaveWaz's Avatar
      DaveWaz

      Just checking in to see how you are doing. Our thoughts are with you.

      over 4 years ago
  • jbrw's Avatar
  • jbrw's Avatar

    jbrw asked a questionBrain and Spinal Cord Tumors in Adults

    3 months after stopping treatment for stage 4 glioblastoma; slowly declining. Anyone have experiences at this stage?

    • steve70x7's Avatar
      steve70x7

      Our prayers are with you and your PT.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      With my Mother and Father, we took care of them in Hospice care at home until the end. While a hard thing to do, we were glad we were able to be there for them and take care of them. We lost them both to cancer 10 months apart. did you have any questions?

      over 4 years ago
    • jbrw's Avatar
      jbrw

      Thanks. Hospice is here at home, along with caretakers. Siblings live out of town, and we're here as often as we can be. Just wondering what to expect....other than each case is individual, and there are several possibilities, which is all medical and hospice people can tell us. It's helpful when people tell us their experiences, even though we know everyone's different.

      over 4 years ago
  • jbrw's Avatar

    jbrw wrote on TrustinginGod's wall

    My thoughts are with you. My brother was diagnosed with stage 4 glioblastoma in September 2011. They said from the beginning that his was a particularly aggressive tumor. He had surgery, radiation/chemo and chemo; at the end of January MRI showed no signs that the treatment was working, and we brought in hospice in February. We did the treatment because that's what he wanted, but its difficult to know if that made a difference or not. Radiation/chemo was very tiring and there were a couple of times where we considered stopping it because he was feeling so poorly. One round of chemo had horrible side effects, but the second one was better. Throughout, although he declined to needing a wheelchair to go anywhere, and was falling a lot, he still maintained a reasonable quality of life (diminished as it was), seeing friends, going out to eat. His speech has deteriorated significantly. By the end of February he was no longer interested in going out, and has his days where he sleeps most of the day, and those where he can still interact with visitors. Now he's at the point where someone has to sit with him all the time, he needs assistance with almost every activity; but, his sense of humor has returned for moments, at times he still interacts with people, and is still eating well. Every week brings a new decline, sometimes marked, sometimes gradual. We don't know how long he will be with us, nor can we predict what will happen. While it is very hard to see him this way, he seems to be at peace with what's going on, knows he is dying, and has taught us that even short moments can be joyful. There is no right or wrong answer, and no way to know which is better. If you start radiation/chemo and the side effects are detrimental, you can always stop it. If you trust the doctor, have a long conversation about the pro's and con's, but understanding they usually have no answers that you can count on -- brain cancer is just so individualized it's hard to say with any certainty what will happen. Enjoy the moments you can, be patient when it's all lousy, and make sure you take the time to take care of yourself.

  • jbrw's Avatar

    jbrw shared an experience

    Decision Point: MRI after 2 rounds of temodar showed no shrinkage of original tumor, and another new spot on the other side of the brain. Dr's recommended no more treatment, and we all agreed. Starting in-home hospice. At this point, transition is no big change - he had a nurse coming once a week, now he has a different nurse. To us, it is a big relief to have someone to coordinate everything, and a resource to talk with. The hospice people know what they're doing and seeing, and over time I think will be a great comfort to us all.

    Interestingly, about a week after the MRI, falling decreased significantly. Speech and cognitive skills still slowly declining; more restless, not sleeping as much, eating up everything in sight.

    As long as he can continue to enjoy going out with friends, and having them visit for short periods of time, we'll take it.

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    jbrw asked a questionBrain and Spinal Cord Tumors in Adults

    Does anyone have any experience with hospices in NYC?

    • CarolLHRN's Avatar
      CarolLHRN

      I am familiar with Calvary Hospital which has a hospice team. I believe the hospital is in the Bronx but they serve the NYC area. Calvary Hospital specializes in caring for people at the end of their lives and is really good.

      Most important about hospice is the services they can provide. Take them up on anything they offer. Even having a volunteer visit for an hour helps a lot. Most insurance companies just cover "hospice" and it's up to the agency to decide what services your brother will need and come up with a plan. Be honest about your brother's needs. Usually things like laundry and cleaning aren't covered services but many things are. It never hurts to ask.

      My thoughts are with you. With the right hospice agency, this process can be peaceful.

      over 4 years ago