Decline/end stage info from those that have lost someone to GBM

My dad appears to be entering the final stages of this horrible disease.  he ate his last full meal on Friday afternoon and other then when we have forced him to get up for depend changes and a sitz bath he has been in bed since 6pm on Friday.  He only drinks when we force him and he will only eat a few bites and then turn his head so we have been getting about 2 ensure drinks in him a day.  He is responding when we talk to him but he says okay and yes but then doesn't do what we ask him to do (lift a foot to get into shorts or let go of the walker rail so we can get his shirt on)  He is tryiing to eat his medicine and we have to pry open his mouth to pour water in and then keep telling him to swallow.  We are physically having to move whatever we need moved sometimes with him stiffening up fighting us to move limbs.  According to the Brain Hospice website he has less than two weeks but this decline has been so rapid since Friday I was wondering if anyone elses loved one declined like this in the end and how long we have left.  It is so sad to see him this way and I am due to deliver his next grand child 10/23 which is almost two weeks away and I really just wanted one picture with him but I don't think he's going to make it that long.  I know everyone is different but I just wanted some real opinions on what the future holds.  What happens to him from here and how long we have as the dr's are useless.  Sorry just bitter because we tried to tell them weeks ago dad was declining but they didn't think so and now they are telling us what we were previously telling them.

We see the NO tomorrow which I'm sure he'll go into hospice at this point, 

Thanks for all your support along the way and your honoety here at the end. 

Dear Flfrog,

Here you are, at such a moment. I'm really sorry to hear about your father's decline. It doesn't sound like he is in distress or uncomfortable... you're doing such a good job taking care of him. Bless you for that. I hope it gives you a tiny bit of comfort. I don't know how anyone can do anything but what you're doing, which is to follow your heart and your instincts.  He may go quickly or slowly. It all depends on what's happening in his brain, right? No two patients will be alike. It sounds like the alternative methods of med delivery will be helpful -- sublingual, suppositories, etc. I heard that meds can be crushed with butter (!) and inserted as suppositories. I think I read that from a few caregivers on another support group.

I'm sorry and I understand about your worries about the baby being born after your father passes, maybe. If you have pictures of YOU and him together, I know you could tell that child someday that he/she was there. That there was so much love in the house. That his/her grandfather loved him or here even before he or she was born.

I will be thinking of you. Hoping his days are peaceful and comfortable.

Love, Sarah

mother of Andy 27 dx gbm/pnet 1/09

May God Bless you for all you have done with your father. You really need intervention at this point. Especially because you are soon to deliver your baby. Every patient is different, but there are signs there that he is letting go and giving up the fight, I recently lost my best friend to Leiomyosarcoma, a battle she foughht for 4 years so gracefully till the end. She entered a Hospice Family Center and they were wonderful with us and her till the last day. They knew exactly what to do to make the trasition comfortable and peaceful.

I'm on the Board of a not for profit foundation called Edna's Foundation of Hope. Please log onto her website.

I don't know where you are located but, I'm sure a Hospice location can be of great help. Doctors sometimes do not know.

May God Bless you !

Janice M.

I am so sorry that you and your Dad are going through this too. I lost my husband to a gbm only 5 and a half months after he was dxed. I lost him April 3 of this year. He was doing well then went down hill for two weeks before we lost him.

What you describe sounds like my husband about a week before we lost him. He got so he could not eat or drink and we decided to just keep him comfortable. We realized that to force nourishment was only prolonging his dieing and not prolonging his living. It was all so so very hard. My heart goes out to you.

Home health and hospice was helping us, and thank God for them. The best thing I did the last days was climb into bed with my husband and just hold him. If I could go back, I would do that for hours each day. He was most at peace when I did.

God bless you and your Dad.

-Diana

Fred was in a coma for 10 days before he died.  Amazingly he ate nothing substantial for the last 2 1/2 weeks and he drank nothing for over 2 weeks.  He was getting IV fluids until about a week before he died but the last week he received only enough IV fluids to get antiseizure meds into him. He reached a plateau and then slowly creeped toward death.  The body's metabilism slows down and can hang on with no interventions for a long time.

I don't know if what I just told you is a comfort and provides hope or a burden because it is so tough to plan things with so much uncertainty. My only suggestion is get as much help as you can.  Fred was bedridden (refused to leave the bed even for a chair) the last month even when he could talk, eat, and at times control his bladder.  It was like he got in the bed and did not want to leave.  He wore diapers, condom caths and then a foley cath.  Will the hospice nurses put in a foley.  There is a risk of infection with the foley but it makes life easier for caregivers plus the skin breaks down with urine contact.  After his bowels slowed down we removed the diapers or just layed them under him so his skin would have no problems.

Take care,

JMB

I should add, Fred was in a palliative care hospital the last month of his life.  I stayed there with him but I learned a huge amount from the nurses and aides there about care.  Fred had no skin issues and was very comfortable and died peacefully.  I could not have done this at home without needing to be hospitalized myself afterward and the worry and guilt about not doing the right thing medically for him to make him comfortable would have been too much for me.

Thank you all for your support and the details.  My husband is having hospice come out this morning and we are supposed to see the NO this afternoon but I don't know if daddy can make it.  It took us 40 minutes last night to change daddy's clothes and depends because you ask him to do things and he says yeah but doesn't do them, just keeps repeating himself.  The appt is more for us because two weeks ago we told him daddy was declining and even though daddy didn't know the year, month or place he was at he said only dad could make the decision about stopping treatment.

Now I'm anxious to see if hospice thinks they can provide enough support to keep him here or if he needs to be placed in their facility.  I want him here but I'm concerned about when I go intot he hospital to have the baby what will happen and then it's going to be hard for me to be able to go visit him but I definately can't take care of him during the day by myself and I think the hospice people only come periodically through the week.  I wish he was lucid and could have a conversation.  yesterday morning I said I love and he said I love you to and could use a straw.  Last night he couldn't use the straw and when I said I love you he just kept repeat love you every few minutes and then okay.  It is sooooo hard to watch this.

This is just so hard to know the right thing to do and the decline was so fast,

Thank you again for your support. 

Dear Flfrog,

You have to trust that your dad will be there when you have your baby, whether in body or spirit, and he will watch over you.  You have been a wonderful daughter to care for him so, and God can take over now.  Trust that your dad will be OK and look for ways to share him with others.  God bless you, and remember that this life is NOT the end.

janni

We saw dad's NO yesterday and they admitted dad to the hospital to find out what is going on.  He was dehydrated and this morning he was a little more responsive, still confused but he's improved a little with fluids.  This afternoon he seemed a little worse and was having conversations with himself.  They did a neuro consult and they ordered and EEG  but they thought it was from the infection and his anal abscess.  The general surgeon came in and said his pelvic ct was fine and wasn't causing the neurological issues so hopefully tonight we'll know more.  They are doing head scans to see if he has bleeding from when he hit his head two weeks ago.  They haven't ruled out if it is tumor progression or if he's had a stroke. 

The roller coaster ride continues!  Thank you all for your kind words, thoughts and prayers.