Jan 17, 2012 - 3:14 am
Well, here's where we are at......David is going back to OHSU next Tuesday. He will be admitted and get a bunch of tests...an MRI, bloodwork, etc. Then Wed. he will have intra-arterial chemos--two via the femoral artery up to his carotid, and one chemo thru his port. Then he will be discharged on Thursday, and come back as an outpatient on Friday and receive Avastin via IV. Then he will go home again on Friday. I will stay with him in the hospital and I will stay with him in his apartment on Saturday and Sunday and then I'll go home on Monday to Salem (one hour away) and David will be on his own. That's assuming that he tolerates this treatment okay, and that we don't have another unpleasant surprise like we did last month with the BBBD.
Now this is the part that is giving me trouble: David really wants to go back to independent living. I am so torn. He's made huge strides in his recovery from the BBBD fiasco but I don't know if he should live all by himself. Tonight I went out with my daughter Cathy, and as she drove me home, we saw David walking down our cul-de-sac in the dark. It was 9 pm, and it was lightly raining, about 36 degrees. He was all bundled up, with a hat on. He'd walked to a convenience store about 7 minutes away. I came in the house and when he got home I talked to him. I asked him if he would walk around his neighborhood by himself at night when he went home and he said probably. I said that I was having a hard time with my emotions. Part of me felt really glad that he felt well enough to walk to the store, but another part of me is terrified that he will do that when he's back in Portland. He could get mugged and beat up and left in the bushes and no one would even miss him or know that he was gone. Or he could have a seizure or some health issue and be outside in the freezing cold. He said, "That won't happen." I thought about it for a long time without saying anything, and then I finally said, "Did it feel good to go for that walk, David?" He said, "Yes, it felt good." He thought about it and then he said, "It felt really, really good, Mom."
I know that if it was me, I would want to risk a seizure or whatever, to be able to live in my own home again. I don't feel right about coming against him, browbeating him or guilt tripping him, or worse yet, putting a fear in him, about living on his own. It's a balancing act....how do I measure the risks of him being alone against the positives of being independent? He wants to go back to his home....he longs for it, he's sad for it, his heart is there.....I will do everything I can to make it possible for him to live there. I guess I will be driving back and forth to Portland several times a week, to take David for bloodwork, to check on him, to bring him food....I just hope that I am making the right decision about him being able to live alone.
His doctors don't think he should live alone. But you know what? I don't really put a lot of stock in what they think. My daughter Christy and I were talking about the last BBBD treatment, and she said that we never should have allowed them to do the BBBD a second time. She is correct. We knew that there was something wrong. I tried to tell them that David was "off" and they just said, "seizures" and went ahead and did the treatment. I blame myself because I know David way better than they know David, and I knew in my heart that he was not okay. I should have been more forceful about his condition. When I told the nurses that he was not doing so good before the BBBD, they called our NO and he sent the resident NO on call to check on David and to talk to me. I like that NO personally but I can't stand her as a doctor. She has told us incorrect info several times and I don't feel like she knows what she is doing. She comes across as being unsure of herself. The last time we were in ER, I told the ER doctor if the only NO on call was that resident NO, please don't sent her to see us. I didn't want to see any NO if it had to be her. She had told us on a previous ER visit that the MRI they did in the ER didn't show any changes, but the ER doctor said that they saw significant growth. Then the next day, our head NO said there was significant growth...so what the heck was that resident NO talking about? She gave us some false hope and then that made the bad news even worse.....anyway, I should have insisted on a different doctor and more tests or something before the last BBBD treatment. I will never, ever be such a wienie again....the doctors intimidate me, but no more. I'm going to start saying what I think and insisting on seeing doctors that I have confidence in. So when they also think they know him so well and they think he isn't capable of living alone....well, I think he can. And I know he wants to try, so we will try. But if something happens to him, I will never, ever forgive myself.
Well, I guess I just worked through my dilemma. My family all says that we still have two weeks to decide and we should wait and not make any hasty decisions. We really won't know if David can live alone until we see how he handles the IA chemo.
Thanks for letting me put all of my feelings down in writing. It really does help me sort through my thoughts.
Has anyone else struggled with this kind of dilemma---trying to determine if your loved one could handle living alone? How did you make that decision?
Love and blessings,