My Dad

[Carol Dee]

Take care of yourself, #1. Next, to work off your tension and frustrations, go see your brother and whip his ass! It will give him a much needed wake up moment and give you a marvelous relief. Take a baseball bat.

Hee-hee I kinda like that advice Note to self never upsetBaymule!

 

[ninnymary]

You are going through so much. Wish there was something I could do for you.

Mary

 

[journey11]

My dad is back in the hospital. Last Wednesday I noticed he was inappropriately emotional, very happy one minute, hugging us and crying the next. The next day, he was washing all the laundry in the house. Friday, we had a fishing trip planned. I was going to take him to fish the Elk River down where his grandma had lived and we were going to hunt for mushrooms too. He said that was what he wanted to do and I was going to make it happen. But when I got there that morning to pick him up, he was in distress, having trouble walking and talking, said everything hurt, but couldn't tell me what exactly.

I grabbed his meds before we left for the ER, noticed he hadn't taken his morning dose, so I gave it to him then. As the steroid kicked in a couple hours later, he was flipping out, combative and trying to leave the ER. 6 people could hardly get him back in. They gave him dose after dose of sedative, eventually had to strap him down, transported him to the bigger hospital in Charleston. We spent 14.5 hours in the ER, not because they were slow, but because he was not cooperating.

Past couple of days, they've had him on double the dose of steroid he was taking and he is not coming back into his right mind. They keep him calm on an anti-psychotic so he's not constantly fighting them and trying to get away. When I go to see him, he acts up, begs me to get him out of there, but he is also talking out of his head and not all there. They've run every test on him possible and found no biological reason why he is not coming back to on the IV steroid now that the swelling has gone down.

The MRI came back saying his cancer looked better than it did 6 weeks ago and the immunotherapy was working and he was tolerating it well. Doctors, family and I all agree--he quit taking his meds and precipitated this. All or some, I am not sure. He must have been putting them back in the bottle or in the trash so it always looked like he was taking them on time when I came to fill his pill boxes each week. Saddest thing is, he was the most clear-headed on immunotherapy and seemed to be feeling the best he had since all this happened to him over a year ago. We thought he was doing well. If he wasn't feeling well, he never gave us any hint of it. Maybe he thought he was well enough to quit taking meds. He always hated having to take so many. The doctor was just starting to step him down off of the steroid to see if the Avastin (immunotherapy) would control the swelling alone. He was doing so well... So much better than expected for GBM4 cancer. We were hopeful.

But all in all, I know he wasn't happy just existing, just getting by like this. His strength and independence were very important to him and he wanted to live his life on his own terms. He was discouraged at the thought that he would have to keep going every 2 weeks for an infusion that would keep him alive. He didn't want to just do well with this type of cancer, wait and worry, he wanted it GONE. And all the hindrances that come with it GONE. He went along with things and endured them as best he could for our sakes. He was trusting me to sort through it all for him because he never really fully understood all these medical things about his condition. I think if he was feeling bad physically or was depressed, he was hiding it from us, putting on a brave face.

So now he's stuck in this boat. 4 days later and his mental competency has not returned even on IV steroids. MPOA has kicked in and I have to sign things and make decisions. The Oncologist said the immunotherapy was working for him, but he cannot continue it unless he is able to consent on his own because there are rare, but serious side-effects. They'll want to discharge him from the hospital here tomorrow or so as there is nothing else they can do to help. His fine motor skills are off and he has trouble feeding himself, even though he has a good appetite. He is unsteady and unable to walk on his own, so he'll go to rehab for a while to see if he improves. If his mind comes back, he may bounce back from this yet, but I think we are looking at the end here. I am not going to hold him here in this state as it is the last thing he would want. We may have a month or so where we have to decide if we can take care of him ourselves or if he has to go to a long-term care facility (short-term, for the type of cancer he has). When they think he is a month or less away, they'll send him to hospice.

Although the doctors haven't told me what to expect at this point, I feel in my heart he will not be here much longer. I wish I could have prevented all of this for him. But I can't second-guess myself as I know I did all I could, up to what he would even let me, and I made the most of the time we still had. Just wish I had foreseen this. There were signs, but we all didn't put it together until just now. Just keep us in your prayers please. I think I'm getting by alright, so don't worry about me. It helps me to talk about it. I don't feel panicked. I feel clear-headed. I have peace about it. I don't want to hold him here any longer than God allows and he's ready to go Home. My sister and brother aren't doing so well though. My sister panics over everything, but I think she'll be ok. My brother was mad at Dad and hadn't seen him in about 7 months because Dad was upset that he and his druggie girlfriend made a baby (as we all were.) Dad never got to see the baby. My brother should have let a lot of things go because Dad was altered in his thinking from the brain tumor of course. My brother is going to have some devastating regrets. But he did say he would go see Dad today when I pleaded with him to.

 

[ninnymary]

Oh Journey, my hearts breaks for you. I will keep you in prayer. Know that you did all that you could and a splendid job at that.

Mary

 

[Poka_Doodle]

Wish I could say more then stay strong. I never realized I'd say this to you, but I'm really watching your decisions at this point with him, I feel that I'll be amongst those making similar decisions with my aunt in a couple years, as she has Cancer all over.

 

[journey11]

Wish I could say more then stay strong. I never realized I'd say this to you, but I'm really watching your decisions at this point with him, I feel that I'll be amongst those making similar decisions with my aunt in a couple years, as she has Cancer all over.

I just wish my dad would have put in writing what he wanted. He didn't want to do a Living Will by the time we realized he had cancer, just gave me MPOA, because he couldn't contemplate all those details and said he trusted me to take care of it. Only thing I know is that he just wanted to "keep on keepin' on" until he could go no further. The tumor was the size of a chicken egg by the time he first ended up in the ER. He had gone to work that day! He had to have known things were going wrong, just didn't want to deal with it. Was totally on a crash and burn kind of course there. If your aunt is at all able, try to have those conversations with her early and get a Living Will or Advance Directive done long before you need it. I am very close to my Dad, so I have a pretty good idea what he would choose if he could. It really helps others not to question your decisions though, if they put it in writing themselves.

 

[Poka_Doodle]

I just wish my dad would have put in writing what he wanted. He didn't want to do a Living Will by the time we realized he had cancer, just gave me MPOA, because he couldn't contemplate all those details and said he trusted me to take care of it. Only thing I know is that he just wanted to "keep on keepin' on" until he could go no further. The tumor was the size of a chicken egg by the time he first ended up in the ER. He had gone to work that day! He had to have known things were going wrong, just didn't want to deal with it. Was totally on a crash and burn kind of course there. If your aunt is at all able, try to have those conversations with her early and get a Living Will or Advance Directive done long before you need it. I am very close to my Dad, so I have a pretty good idea what he would choose if he could. It really helps others not to question your decisions though, if they put it in writing themselves.

Very interesting that he was that way. My aunt had realised she had something wrong on her first time with cancer, but didn't realise it this time until a blood test. Then after a CT scan she learned how she didn't know if it before. Things are in writing though, and she told us what to do when she goes (we went out in the beginning of April before her first chemo of this round). Something tells me, that as optimistic as she wants to stay, she thinks this will not make it through this cancer.

 

[catjac1975]

Seeing that he is not of sound mind and you will be making decisions you will have to put yourself in his shoes and know what you would want tor yourself. My nephew's 80 year old step Dad passed with lung cancer. He accepted all treatment and the end was not the worst I have ever seen. He made my nephew promise to just let him go. But he was in his right mindto be able to express this. My nephew told him not to eat or drink and it would take less time. The worst was over in about a week.

 

[Nyboy]

Be strong but ok to cry

 

[journey11]

The GBM support group folks are saying it may go very fast. The hardest decisions for me to make are the ones about his care and living arrangements. He just wants to be in his own home, but it is not possible right now. I hate that he can't have that comfort.