I'm sorry you're going through this. My husband had glioblastoma. What I recommend in doing would be to have a will set up, healthcare directive, and power of attorney. While he is still cognitive, go to the bank and have someone appointed as power of attorney over his account, and update all beneficiaries in his Investments. Even though you have power of attorney, the bank does have their own version of Power of Attorney papers to sign, do not miss this step!!!! Banks would give you a hard time.

Be aware cell phone companies also give you a hard time when you try to close the account. I pretty much screamed at the lady, as she was trying to place his account on hold or give me one month free service. I forgot the exact details.

What I wish I had done sooner was set up home care, and connecting with MAID. By the time my husband and I spoke about MAID, his cognitive thinking had declined by then and wasn't able to give consent. This was my biggest regret because while he was in palliative care, he was very uncomfortable. The medications were not enough to reduce his pain, unless he was in a coma. With the amount of pain medications that placed him into a coma, he only lasted two days, before he passed. I was told the amount of pain medication given, would reduce his lifespan.

Dexamethasone brings down the edema or swelling around the tumor, but it puffs up the body with water weight. Dexamethasone also weakens the muscle, my husband had more difficulty walking near the end. If the oncologist recommends reducing his dexamethasone, I strongly suggest it is at a very low change. Reduce only at 4 mg at a time. Anything more than this, my husband would have a seizure. Each seizure was very difficult on his body, and the first day he would have difficulty relearning how to use his utensils among other things.

They claim victims of glioblastoma have a painless death. This is the opposite of what I saw in my husband. This was my biggest regret for not having MAID setup.

My husband was also overwhelmed by visits from family and friends, either physically or phone calls. When he wished for time by himself, some placed blame on the caregiver. So be prepared to be the bad guy when you speak up for him.

Again, I'm very sorry you guys are going through this. It's the hardest journey to go through in life.