A Verdict is in

Just as everyone grieves differently, people also tend to process information they hear differently, especially upsetting news.

My family and I have been told a variety of things since the day my mother had her stroke. We've heard:

•   She won't make it. (wrong)

•   She won't be able to feed herself. (wrong)

•   She'll not regain use of her left side. (true, so far)

•   The right side of her brain has been shredded. (only a neurosurgeon can see this)

•   Miracles happen all the time. (true)

•   We've seen everything happen in cases like these. (OK)

•   It will happen again. (time will tell)

•   She needs 24-hour care. (true so far)

•   She'll get better. (in some areas, yes; in others, no)

•   She'll get worse. (in some areas, yes; in others, no)

•   Physical therapy will help. (slowly)

•   Physical therapy won't help. (<sigh>)

•   No gains will be made after two months. (not true)

•   No gains will be made after six months. (don't know yet)

•   No gains will be made beyond a year. (don't know yet)

•   This was caused by "amyloid angiopathy." (true, biopsy said so)

•   She'll be able to transfer herself. (not looking promising)

•   She won't be able to transfer herself. (looks that way)

And so on and so on.

In a nutshell, this is how I've processed all of that: She had a horrible stroke in which she was "lucky" to survive and given an opportunity to get better. She may or may not get better, but hopefully, she will. Even if she gets better, this is most likely to happen again, although we don't know when. Physical therapy and other therapies can help right up until that day happens, if it does. I think she can learn to transfer herself, and therefore, she and Dad can live somewhere together; we just have to find where. I really want to build behind our house so they can live with us, and I can take care of them. 

Yes, that's a great idea. Hmmm, no, it doesn't look like that is going to happen at all. Long-term care? Crap, what about Dad? This is not right!! Maybe that will be temporary and she can progress forward in care. Maybe there's still a chance.  Her brain will continue to improve; the most important thing is that she can communicate with us. Relationships are most important. She can still be happy with family around. I don't think her brain is improving at all. I'm not so sure about this. Maybe medications can help. Maybe when she sees the neurologist, he can help. It's hard to believe, though. I doubt it's going to happen. I've pretty much lost my hope.

My sister, on the other hand, while I don't know the details of her thoughts, has held out reserved hope. She has watched and had good days of hope and some really bad days, just like me. But still, she has maintained hope and confidence that the neurologist can help.

Dad. He's a different story. He has crashed into depression, because his brain must understand the magnitude of all this. But his heart? His heart is a completely different story. His heart has essentially told him this: It's not over. She's going to get better. I know she's going to get better. She's going to come home. She's going to be able to sit in the backyard with the cats and the birds and enjoy herself. The therapies will continue to improve her strength and her thinking. She's going to be OK. I won't give up.

And my mom. I can't say. She can communicate. Every thought is different. Sometimes she's on target. Sometimes she's completely in la la land. Sometimes she knows we love her; sometimes she thinks we've left her and are being mean to her. Sometimes, Dad is the greatest guy in the world; other times, he's rotten and going to leave her. Sometimes, she knows she's had a stroke. Most of the time, she denies it. Sometimes, she knows she can't walk, but most of the time, she thinks she can and gets mad at us because we don't give her "freedom."  Sometimes, she tell us all the things in the house we can have and to go on and live our lives to retain our sanity; most of the time, she criticizes us for being away from her.

Yesterday, we finally got in to see the neurologist. My sister sent out this text to close family and friends:

"Today we had Mom's appointment with her neurologist. I had put off so many of my fears and hopes until talking with him. I guess deep down I thought he would give us the perfect concoction of medicines to make her happy and coherent. I also thought he would tell us that therapy would help bring her the ability to enjoy more in life.

"Within five minutes, he told us that the disease she has, cerebral amyloid angiopathy, is a horrible disease, and she would have another bleed, and then another, and another. He encouraged us to make sure that we, as a family, had a plan ... basically a 'do not resuscitate' in place for her. His official notes are that she has no insight and has no awareness of the seriousness of her condition. Her progress for meaningful recovery is zero.

"Of course when we got back to the nursing facility, social services informed me that insurance stops coverage on Friday, so we are set to move to long term care on Friday on a different hall than we are now. Dad doesn't want to "give up," so we will find and continue therapy, although, according to the doctor, that is in vain."

She goes on to say that watching this is the most gut-wrenching process of her life. I concur with that. Me, too.

So ... you are free to interpret this information however you choose.