Monday, October 15, 2007

144 what's going on part 2: "don't count him out"

I am so angry. Angry beyond words. The ER doctor totally lied to my mother and me. She looked us right in the eye, as we stood there in a cubicle literally sprayed with my father's blood, and told us he was going to die.
I went home and emailed friends and family members an impassioned plea for healing energy. I posted here on this blog this was it.
And people responded overwhelmingly with notes and prayers and drumming circles and cyber hugs. Friends cried with me on the phone.
To save my mother the burden, I went to the funeral home and planned my father's funeral. It wasn't as awful as I had dreaded it being, but it was bad enough. (Worse yet, when I left the funeral home some idiot had put fliers on every car in the lot--you know, those people there for the two wakes in progress--advertising a new restaurant. Yeah, because when people leave a wake, the first thing they do is think, "Man, I could go for some Thai food.") I didn't put down any money, just picked everything out and got an estimate on the big stuff.
And all of it was totally unnecessary. That lying doctor caused us so much more grief than she needed to. And that's why I am angry. I'm not angry that my dad lived. I'm angry that a medical professional gave us a bunch of totally bad information, that led to me giving out that same bad information to a large number of people, that led to a lot of extra grief and work for me and my mom. (And my mom said she --the doctor--put the stitches in my dad's head while he was conscious without anesthesia--that's why he was screaming so much when they made us leave the cubicle.)
After my mom went to see my dad on Friday, she called me and said "Don't count him out". I thought she was in denial. I went to see him and he looked awful. His mouth was still full of dried blood. Blood was all over his pillow, as his head wound was still bleeding. He never opened his eyes the whole time I was there. He just held his hands in front of him like a blind man, always searching. It was horrible to see, and I couldn't stay and look at him like that. His hair, which was brown a couple of weeks ago, has gone iron-gray. (Look at the photo I posted on September 26--his hair is still brown.)
On Saturday I went to see him again. I was shocked when, as I entered the room, he opened up his eyes, looked right at me and said "hi" and reached out his hand. Everything he said after that was gibberish--not a syllable could be understood--but at least he was trying to talk. One of his previous aides was taking care of him again. She had cleaned up most of the dried blood from his head and mouth and was giving him a blue oral rinse (even so, his breath could have flattened a house). I tried to feed him (all pureed foods) without much success. Who knew my "mom" experiences would be with my dad? Feeding, helping to change diapers, bathing. Irony.
On Friday my husband and I had asked to see a doctor and were told they were all at lunch. We saw them come back from lunch but no one came in.
On Saturday, again, no doctors around. I requested to talk to one and waited, but no one came in. Most of the time he was in the fugue state, eyes closed, hands groping.
So yesterday (Sunday), I went to see my dad again and try to feed him his lunch. He recognized Rachel Ray (however you spell her name) on TV and waved to her. He waved to me (a baby wave, slapping the fingers to the palm). He did not like his lunch and kept spitting it out so I finally gave up and was just sitting with him. He kept trying to explain something to me, his eyes all earnest, big sweeping hand gestures as he ranted in a language even his loving daughter couldn't follow. Then he'd look at me expectantly and I couldn't even guess what he wanted in response. I felt horrible.
A priest came in. I'm not Catholic anymore, not even Christian anymore. But that doesn't make me be mean to priests. He just didn't get it. He kept asking my father if he wanted communion. I explained that he has Alzheimer's and brain damage and can't speak. "Can he take the host?" I shrugged and explained that while my father is nominally Catholic, he hasn't been to church once in my entire life, much less gone to confession. The priest looked a little surprised at that. "Can he swallow?" I sighed and said, "If you want to give him communion, go ahead. But he just spit his dinner at me and if you give him the host he'd probably spit it out." Instead of having sympathy for my father's condition, offering to pray for him or with him or anything compassionate, the priest left in a huff, muttering about "spitting out the host." I could hear him out in the hall talking to himself about it. As if someone not in his right mind should understand the significance of a piece of cardboard and know not to spit it out! And you wonder why I'm not a Christian anymore?
And then, thank the gods I believe in and even those I don't, an actual doctor came in to talk to me. A neurologist. (Although the death-talking ER doctor had told us they were NOT calling in a neurologist as my father's bleed was inoperable--another big fat lie.) He was very nice. He told me about the 2 bleeds, said his right side might be affected for a while as the worse one was on the left. He wanted to know what my father had been doing; I told him that Dad had tried to take the cup of juice from me and drink for himself but he couldn't find his mouth; same thing with his spoon. The doctor said that will probably come back. He asked about my father's "baseline" with speech versus the mumblin000g. (I've only heard my dad say 3 clear words since the fall: hi, yeah, and no.) He believes much of his speech may return as well, at least to the level of last week.
So that's it. I feel like the girl who cried wolf, who went around in a great state of drama: my father is dying! Woe unto me! and it was all for nothing. I feel stupid. And angry. I don't like to feel stupid or dramatic. Why do I feel stupid? Because I am a good girl and I believe in authority. I believe when a doctor is smeared with my father's blood, when my father just had a convulsion right in front of me, and that doctor says "he's going to die" that the doctor is telling me the truth.


Patty McNally Doherty said...

Dear Bert,

Take a big deep breath. In and out. Take another one. Now listen.

None of us can predict when a person is going to die. You'd laugh if you knew how many times I called my brothers and sisters from around the country telling them to fly in, that this was the end, only to have my father get up and wonder why everyone was there! It happened many times.

My dad was in hospice care three different times. Each time, everyone, including professionals, thought this was it.

My dad was a tough old bird. He lived a long time with this disease. Longer than anyone thought could be possible. How many elderly patients get pneumonia, go into the hospital, and come out stronger? My dad did, for one.

Don't you ever apologize for thinking your father was dying. Don't ever feel bad for asking we keep him in our prayers. Life is nothing if not unpredictable, right?

Something you might want to do, now, though, is call hospice. Their job is to use only palliative care to treat the dying. They will provide that care for six months. If your father recovers, as my dad always did, they withdraw the care and are ready to come back if he declines again.

Bert, the last thing you need at this point is to feel responsible for crying wolf. You didn't cry wolf. You just cried. We understand. We've been through it.

You still stay wrapped in the warm blanket of my prayers, with your dad beside you.

Take it easy, rest if you can, but whatever you do, keep writing.


e said...

Well, I guess that is why they call it "practicing" medicine, eh? It's just like religion. Everyone has their own theories and no one really KNOWS anything. It's a best guess scenario. This is going to sound morbid, but just consider it a "dry run" and move on to the next crisis.

I feel obligated to make another comment about the crappy health care we have in the US, and it is probably among the most technically advanced in the world! Of course, you have to sift through the doctors with god complexes (I think I must work with at least 1/2 of them), the ones who are in it just for the money who are realizing that thanks to HMOs and student loans and lawsuits a plumber will earn more than they do, and the ones who are truly learning and have not figured it out yet and, well... that leaves about 10 good experienced, caring docs in any given facility. It SUCKS.

Thank goodness you have found a good facility (nursing home) to care for your dad. I'm still looking for my Mom.

Your family is in my thoughts.

Anonymous said...

((( hugs ))) D

Marvel said...

Patty and e are so right. Sorry to hear about this latest episode with your father, Bert. Sending vibes of comfort your way.

Anonymous said...

You aren't the girl who called "Wolf" as you had legitamate reason to think as you did. The doctor told you so. You and your family are in my thoughts and meditations. Thank you for posting this blog.

Anonymous said...

what a horrible way to be treated. I called my family ( who I can't stand!) once when we had mum at the hospital and she was being resucitated in ER, as a nurse I 'knew' that she would not make it. She did.

Just wanted to say I am thinking of you, take care:)