When to Start Hospice Care - 79 year old, GBM

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When to Start Hospice Care - 79 year old, GBM

by BamaDave on Tue Jun 21, 2016 12:21 AM

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Hello, I have posted here a couple of times.  My 79 year old father was diagnosed last July with GBM IV.  He had a tumor resection followed by the standard radiation and Temodar.  By December he had two new tumors.  In April, his right temporal lobe was removed.  He recovered remarkably fast from the surgery but has since steadily declined.  About one month after the surgery, his oncologist recommended no further treatments since modest life extension would not likely be worth the stress of constantly traveling to the hospital for treatments.  

Currently he is still able to walk around, go up and down stairs, sometimes goes outside, and does minor chores like letting the dogs outside.  But he is experiencing a lot of memory loss and confusion.  He is also hallucinating at times.  He sleeps much of the day and is fairly withdrawn socially.  He won't eat much solid food and mostly drinks liquid supplements such as Ensure.  He is losing weight fairly quickly.

My Mom is wondering when to ask hospice to start coming out (I live out of town).  I feel like it probably is time based on what I have read.  His signs sound like early stages of dying, which makes me think his timeline may be three months or less.  Just wondering whether this makes sense to people who have experienced the final months of this terrible disease with a loved one.  He is still able to shower himself, shave, etc. but I suspect the time for that may be coming to a close.  

RE: When to Start Hospice Care - 79 year old, GBM

by rmp1399 on Tue Jun 21, 2016 01:48 PM

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I'm so sorry you are at this stage. We just went through this with my mom. She passed last month. There were definite signs that she had that, looking back, were signs she was in the beginning stages of dying. We probably should have contacted hospice earlier than we did. She became much much weaker. She wasn't able to walk up stairs, She had very restless legs at night (which I didn't realize was a sign until I read the brain hospice timeline), she was became incontinent and slept a lot more during the day. We were handling things pretty well so we didn't call hospice, but I think they would've been helpful to my dad. Especially with bathing. It can't hurt to give hospice a call and have them do an evaluation. They will let you know what is needed. Ours was amazing. I can't say enough good things. They let us know when they thought we needed extra help. They came whenever we wanted them to come for bathing or anything. When the time was getting close....they even have someone that came to sit by her side all night so we could sleep. They are so very helpful. I bet your mom would appreciate the help.

RE: When to Start Hospice Care - 79 year old, GBM

by BamaDave on Tue Jun 21, 2016 05:12 PM

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Thank you for your feedback.  I'm very sorry about your Mom's recent passing.  It's good to know the hospice people were so helpful.

I found a brain tumor symptoms timeline here: http://www.btbuddies.org.uk/hospice-palliative-care/51-sympt

Based on what I'm reading, he may not be quite into the 3-6 weeks timeframe, but he does exhibit several of the signs.  I will probably encourage my Mom to go ahead and have hospice come out.  He is scheduled for another MRI in late July, and she was hesitating to line up hospice now because that would likely cancel the MRI.  She has a need to know what's going on, but I probably need to argue against it.  I don't think there's any benefit at this point and no need for him to have to go the hospital and experience another one of those.

RE: When to Start Hospice Care - 79 year old, GBM

by Doodlechoc on Wed Jun 22, 2016 12:14 PM

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I'm so sorry about your father, it's a horrible disease! I lost my brother a couple of months ago from GBM after being in hospice for around 3 months. He actually improved immensely when he was first admitted, but then went down hill fairly rapidly. One they stopped treatment for my brother he had already been very dependant on my SIL for the last few months previously. You will find that many people wish they had sort hospice earlier. In my SIL situation she wanted it as she wanted to be his wife & not just his career. Hospice gave her that chance to do just that as well as easing the burden on her & the rest of the family. Just a thought, hope all goes as well as can be expected

RE: When to Start Hospice Care - 79 year old, GBM

by BamaDave on Wed Jun 22, 2016 12:22 PM

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Thank you!  I talked to Dad on the phone yesterday and he actually sounded better than when we were visiting this past weekend.  He does still talk about future things like places we can eat the next time we visit... he may give a Smartphone another try, etc.  So he hasn't reached the phase where he is giving up in living.  So maybe he isn't ready for hospice yet?  We have everything confirmed with insurance coverage, etc., so I imagine we can start fairly quickly when needed. 

RE: When to Start Hospice Care - 79 year old, GBM

by BamaDave on Wed Jun 22, 2016 12:22 PM

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Thank you!  I talked to Dad on the phone yesterday and he actually sounded better than when we were visiting this past weekend.  He does still talk about future things like places we can eat the next time we visit... he may give a Smartphone another try, etc.  So he hasn't reached the phase where he is giving up in living.  So maybe he isn't ready for hospice yet?  We have everything confirmed with insurance coverage, etc., so I imagine we can start fairly quickly when needed. 

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