155 The energizer bunny (short)

The nursing home just called my mom. My father is up and out of bed, in a chair, eating.
My husband said he is part cat, but I think he is the energizer bunny.
I'll have to bring back his shoes and glasses and sweatpants. They are still in my car.

154 Visit with a dog; life with a soundtrack

Saturday I was determined to bring Ace to see my dad. I went over my mother's house (she wasn't home) and said "Wanna go for a ride in the car?" which of course provoked all kinds of wild jumping and barking. So I kidnapped the dog, put him in the car and we went up there.
He was very good. He walked right to the front door like he'd been there before. I carried him through the halls to my dad's room and put him on my dad's bed. I was worried he'd want to jump down or wouldn't know my father but he sat right down. My dad was unconscious (not asleep--they said he was in a coma). I lifted his hand and put it on the dog's back and started petting the dog with my father's hand, and my father made a noise. I hope it was a joyful one that he knew his dog was there in the bed with him and not a groan of pain or annoyance.
We stayed about half an hour and because the dog was being so good I let him walk out. Several residents were sitting in the lobby and they all said "let me see your puppy!" I was hesitant because Ace doesn't like men or strangers in general, but he responded well. He let everyone pet him and they all seemed so happy to see a dog.
When I got home my mother yelled at me for taking the dog up there. Not because something bad could have happened to the dog, but because she thought it was a waste of time. But I wanted to bring the dog and I felt better because I did. Even if my dad didn't know Ace was there, he brightened up those other people's day and that's important too.
Yesterday I was at a friend's house in Middletown for a while and then I went up to see my father. He was semi-conscious only. I collected some of his things to bring home--his glasses, his shoes, all his sweatpants (I'll wear them, I don't care). He rolled his head in my direction when I greeted him. His rash was terrible and his fever even worse. I went in the bathroom and wet a wad of paper towels and wiped down his arms, neck and face. When I put the cool cloth on his forehead he closed his eyes and he moved his head to follow where I was wiping. His breathing was ragged and awful. I went to the nurse's station and asked what was going on. I didn't get much of a straight answer, just that he is getting various pain medicines, liquid via mouth and also via butt, but they can't bring down his fever. He hasn't been fed in about a week except the IV with the glucose in it. I told him again that it's okay for him to go. I told him he can't get better, that fighting will only make him be in more pain. When I was leaving I said I would be back in 2 days but that if he wasn't there that would be okay too, and he reached up with his other hand and grabbed my hand where it was holding his and held me there. So I sat back down for a few minutes and rubbed him with the wad of wet paper towels.
It reminded me of when he first got there, when he could still talk a little, the day he hugged me and told me he loved me when I got there, and then when I tried to leave he pushed me back into the chair and said "No, not enough." I've been thinking about that day a lot. It seems to me that's the last time he spoke to me, the last time he really knew me, but I could be wrong. All the while, playing in the background was a classical music cd. One of the nurses brought in a cd player. It was the kind of music played over the credits of a sad movie, all weeping strings and crescendos. So here I was holding my father's hand while he starves to death, with violins wailing in the background, and it was surreal, it really was.
When I left two of the aids came over to talk to me because they could see I was crying. They asked how they could help me and I told them to keep wiping my father with a cold cloth. But I shouldn't have to tell them that; they should know already!
Yesterday my best friend came over after work and we spent several hours eating Chinese food ("we delivery") and going through piles of photo albums. If I had to do it alone, I would have just cried and cried, but she made it fun, by laughing at 80's pictures of me with big hair and stirrup pants, and being amazed at old pictures of people we still know. Two more of my friends showed up too, just to hang out and provide moral support (and play with the kittens). We picked out a lot of family photos and we're making 2 different picture boards for the memorial service. She is allowed to print things out at work, and they've got a plotter, so she can print really big things like posters and banners. We scanned in all the pictures we picked out and cleaned them up in Photoshop and she's going to print them all out at various sizes and draw out some layouts of how we can arrange them. I also got a lot of pictures of butterflies and other things my father enjoyed to sprinkling among the family photos. My favorite picture is the one shown here--me and my dad with our first Siamese cat. Looking at it makes me cry. If this was a paper journal, the ink would be running with tears.
My mom went to see my dad this morning. She said he "told" his aide, the one who loves him, he didn't want the oxygen anymore. I am skeptical that he spoke actual words, but Mom thinks he did. I think he might have grunted and pushed her hand away; I might describe that as him "telling" me. His fever is back down (again) and he seemed more awake. The aide said every day she expects to find him dead. That must be wearing on her too. I can see how much she likes him; she calls him Bobby and I saw her tickling him and trying to get him to laugh one day.

153 the saddest thing & cat for a dad

As I was lying awake the other night, unable to sleep because of all things I had to do churning in my head (yet not awake enough to get out of bed and do any of them) I realized that we can't cremate my father in his hospital bed gown. It just wouldn't be right. I know that's totally illogical. I have a bag of clothes (that the nursing home rejected as being too difficult to put on him) that I haven't been able to bring to Goodwill due to lack of time. So yesterday at lunch I sat in my car and went through the whole bag, looking for something comfortable. Something you'd want to spend eternity in. And it had to be green, of course, my dad's favorite color.
And this stupid little task affected me so much. I was sitting in the car just sobbing. I picked out a nice soft green button-down shirt, and a pair of dark grey pants, also very soft. I think my mom threw away his old Red Sox hat and I honestly don't want to spend $20 on a hat just to burn it, but if I can find such a hat, I'll add that to the bag also. His favorite sneakers with the green laces I bought him are still at the nursing home, but I'll add those too. Socks and underwear, I guess, although do the funeral directors really use them? I can't see my dad going commando-style.
And then I went up to see him after work, dreading what I would find. A corpse? Something a half step above? Burning with fever, moaning with pain.
What I found was a thin man who looks older than his age, curled in bed, watching Oprah. Not that he has any comprehensive of Oprah, or cares about how women in their 30's should dress as opposed to women in their 40's, 50's and 60's. Not that he ever looked at me or acknowledged my presence. (Except when I sat on his foot by accident--then he made a fuss, moaning and throwing his head around.)
They have him on oxygen--not a mask, those prong things. Which we didn't authorize, but they considered it a "comfort and care measure". His fever is down to 99. They took him off the morphine. He looked about 150x better than he did the day before.
Now I don't know what to think. I stayed with him about an hour. He never looked at me even when I spoke to him. He had a few coughing fits that made me uneasy and that also dislodged his breathing tube.
So I had dinner and went home. I told my husband about it and he got angry (not at me) saying that he keeps telling people that his father-in-law is dying and has a few days left to live and then he doesn't die and he looks like a fool. He demanded to know if my father's parents were actually cats. (Could be--I've never seen a picture of my father's father, and I don't even know his name.) How many lives does this guy have? And why is he fighting so hard to live?

149: update

The nursing home has finally taken my dad off all his heart medicines and Alzheimer's medicines. Now he's on a BP medicine (new, not sure why as he's never had a BP problem before), anti-seizure medicine (but reduced from initial dosage), an antibiotic for the MRSA, and I think one other thing, can't remember what.
Yesterday he was holding his head up--not all the way, but no longer chin-on-chest. We were there at lunch. He is still "holding" his food, meaning he accepts it into his mouth but doesn't swallow or chew. I got him to eat his vanilla pudding but it seems pointless. Am I not just prolonging his life by making him eat pudding?
His fever is down to 99-100 from the 102 it was for days. His eye is no longer bright red and both his eyes point in the same direction again. He looked at me a few times and while there wasn't exactly recognition, he was definitely LOOKING, not just randomly aiming his eyes toward a sound or shape. He did something with half of his mouth a couple of times that might have been meant to be a smile.
I held his hand and when I wanted to leave he wouldn't let go. My husband thought I was exaggerating so he came over and tried to remove my hand from my father's and was amazed at how strong his hands are.
Last week when he was really bad, his hands were so hot they were uncomfortable to hold. Now they were regular hand temperature. I have a feeling any HBP he has is related to either the extended fever or the swelling in the brain (if there is indeed any).
My grandmother, now living with my mom, has given up her cane--she used it rather ostentatiously the first few days, groaning with the effort it took her to walk anywhere. She took over, spreading her stuff throughout the house, not just in her room (which was my room once). She talks constantly, eats constantly, and is always fussing with something. She is making my mom insane. She doesn't like to be left alone but she doesn't want to go anywhere so my mom is back to being trapped in the house. Grandma has the TV on so loud I can't stand to be anywhere in the house, and she sits a foot from it with her sunglasses on. (She has macular degeneration.) And it is a little annoying for me that I can't see my mom alone. We have to conspire to keep things from my grandmother--how bad my father is, how bad my grandmother's brother's cancer is--otherwise she flips out and makes herself sick. And how can we do that when she's always THERE?

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.