The GBM ending

I have read a lot of the discussions here and most sound as if the loved one died in a hospital or at a hospice.  Not knowing what the end looks like can I keep my husband at home?  He has already spent 3 months in a hospital due to complications of his surgery. 

Each individual is different. Many are able to keep there loved ones at home. In our situation that was not possible, major things went south over night and doctor told me there was no way to keep him at home. I couldn't do it even with the help of hospice, so it was hospital for them to get issues under control and then facility to continue and make changes to care as needed for changes in him as they came, to keep him comfortable in his last days.

good luck to you in your journey.

Joyce

Dear Hopeful,

The end can play out in so many different ways.

In my situation, the end was tough, not peaceful, but I was able to keep him at home.  Hospice was in and out and I hired a home health nurse to stay with us the last two nights of his life. 

If it is the desire of your husband and you to have him pass away at home then try your best, but don't be too hard on yourself if it doesn't happen.

You will probably need support to make it happen--either hospice, possibly a home health nurse, family and friends. 

God bless,  Sally

My husband had inoperable GBM IV of the thalamus. His cancer was very aggressive and caused measureable mental and physical decline each day. He was working on Friday and Sunday I took him to the ER because I thought he had a stroke.  When we left the hospital 8 days later he was almost childlike and had very limited use of his right side.

My daughter moved back home and worked limited hours and my son came every evening after work because my husband had to be watched continually- he couldn't remember that he had limited function in his right leg and would fall, if he had a glass of water and looked away he couldn't keep his cup upright and would spill the contents, he couldn't remember that he had brain cancer and was very confused by the limitations in his life, and he had great difficulty with talking.

My husband had to be rehospitalized for intestinal bleeding just 2 weeks later.  He was there for a week and wanted to come home so we brought him home.  It is very difficult to watch the one you love die a little more each day.  However I am very glad that we were able to give him the comfort of our care and our home.

When he came home he was in a wheelchair but insisted on using the restroom.  So that became the main object of every day- getting him from the wheelchair to the walker (to get through the bathroom door) to the toilet.  That was the last shred of dignity that he had so as long as he wanted to try we would help him. I had to hire help during the day because it took two people to accomplish the mission.

At 8 weeks he could no longer get out of bed or even feed himself. We used condom catheters so that we wouldn't have to change the depends so often.  Preventing bed sores became our main physical mission.  That was exhausting, we had to turn him every 2 hours. Hospice sent someone for baths :) 2x and then 3 x a week.  The nurse came a minimum of 1x a week or whatever was needed.  The doctor only came once a month.  You can call them anytime for advice.

Seizures were a real concern but he didn't have any until the last week and they were mild ones. He had some headaches but not terrible ones.  He did have a lot of abdominal pain and leg pain that was not as easily managed. The last week of his life he slept most of the time and refused food and water.

Our battle was only 12 weeks but it seemed like forever.  It was a horrible thing to go through but when you love someone you do what you need to do.  I know I spent too much time crying during his illness but I couldn't stop-  I knew from the beginning that he was dying.  I have read that many GBM patients are angry but my husband was never even cross and seeing my continually teary eyed face must have been annoying at the very least but he never complained.  I miss him terribly.

In an effort to keep things short I am sure I have left out things - message me with any questions.

If you have support you can get through hospice at home. Pray for God's help, it will be difficult but worth it.

I will be praying for you.

I did hospice at home, I assume a nurse will visit every day and some type of aide will be in a couple of times a week. With a hospital bed I think it is doable, you are going to need at least one other person though, changing sheets, bathing, changing hospital gowns, getting the bed pan adjusted etc. requires two people.

Your husband will not want to get out of bed eventually, you will need to do everything there, having a bed that goes up and down will become a neccessity.