transitioning

Today I was sitting in a restaurant, eating, and a text message came in on my phone. I thought it was my husband responding to an earlier message from me, and it wasn't.  It was from a really good friend of mine, whose adult son has cancer, and the message was to let me know that his time had come, any minute now.  Maybe even as I'm writing this, who knows?  The second part of the message was to ask me to spiritually be part of her son's transition team.  She also asked for my dad's help.
I was sitting there just crying over my food and the waitress came over and though the food was wrong (again, it had already been remade once) and I told her what I'd just learned and she said "Do you need a hug?" and she hugged me.  It was so sweet.
I'm so sad for my friend, but at the same time I am so honored that she took time out from being with her son for the last time to think of me and to invite me in.  And invite my dad!  If there is ever a time in the world to be completely selfish, it's when you're watching someone you love die.  There is no room for anyone else there.  And she let me in.  She asked me in.  I'd go there if I could, but she's hundreds of mile away, and she's got 7 other children plus some grandchildren--no room for me to be there physically, that's for sure.
A transition team is basically anyone who is there, in body or spirit, to help someone transition between worlds.  You could work with women in labor, welcoming their new babies to this world, or with the dying, saying goodbye.
I wrote back and told her of course I'd be there with her in spirit and I assigned my dad and grandma and all the pets and whoever else is up there to welcome her son home with open arms, to bring him into the Elsewhere Bar and teach him what's what.
I'm so sorry for her loss.  Not having any children, I can't imagine the pain of losing one.  But I know how much it hurts to lose a beloved pet, and I'm sure it's 100x worse if it's your human child.  She had sent me a message in the fall saying that he was doing really bad and in a lot of pain, and that he, and everyone else, was praying for his pain to end, for him to die.  I know that feeling all too well, and the combination of relief and grief that will follow upon his death.
(image source)

157 dying, part 4

My mom and I went up to see my dad. His favorite aide was there in his room, working with the other resident. She came over to talk to us and said she can't stand to see my dad like this. He hasn't eaten since Tuesday night. He's not feverish, but he was in his "staring blankly" mode and he wouldn't change his gaze even when he waved our hands before his face. We talked to him for a while but he was completely unresponsive. We left the room to go talk to the nurses' station, wondering why no one had called and told us that he stopped eating again. While we were there talking about his care, a woman in a turban came over and said he was glad she found us, she was just about to call. We went into her office and talked about hospice care. Not the actual Hospice with a capital H, but the kind they administer there. We said no IV this time, and they're going to give him a mixture of 3 drugs--Morphine, Adavan (sp?) and something else with an L I never heard of. She was going to put a nursing order that he get those once a shift (8 hours), and if he seemed to be uncomfortable she'd raise it to every 4 hours and eventually every 2, and always before he had to be moved as he always seems uncomfortable when that happens. She said his skin is just breaking down--it's beyond bedsores. He is skin and bones and he lies in whatever position he's left in, even if it's uncomfortable. His urine output, even when he was eating and drinking, is down to almost nothing.
This nurse said the longest she'd ever seen anyone last like that was 21 days. She said he most likely would NOT die this weekend, but next week.
I've seen this before, though--this is time number 4. I'm sad, but I guess a part of me just doesn't believe it. I think I won't believe it now until he actually dies.

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?

152: fever + brain bleed + morphine = it doesn't look good

My mom and I went up to the nursing home to see my dad. To say goodbye, basically. His fever remains at 104. They took him off the antibiotic because he has an awful rash that they think is in response to the antibiotic (and it does look like the one I get from Keflex).
He's severely dehydrated.
He's unconscious.
He can no longer swallow.
His kidneys are failing.
His brain is bleeding.
And they have him on morphine.
The various opinions of the aides and nurses is 3-4 days, maybe a week. They all tried to give us hope: he could rally! He could pull out of this downward spiral. That's not what we need to hear.
He's so thin that under the covers he looks like a mummy. He's burning up. We had a wet cloth on his head and after a few minutes it would not only be dry, it would be hot.
So we held his hands and kissed him and told him over and over to go. That Aunt Bert, who was his mother in all but name, would come for him, and he could see Alf and Patches again. We told him we would be all right without him. He can watch over us from the afterlife.
He's unconscious, but with one eye open (hanging open, if that makes any sense), breathing harshly through his mouth. He didn't respond at all to me, holding his right hand, but he did squeeze my mother's hand with his left. His color is very high, very red, from the fever. He doesn't have that pinched nose dying look yet, which he did have a couple of weeks ago in the hospital. So I'd guess maybe some time this weekend.
Honestly, there is nothing left of him TO rally. His brain is shot, his kidneys are shot, this infection is blowing through him like wildfire.
My mother says she won't go back up there again. She said her final goodbye today. I'm going up tomorrow. I can't go on Friday. If he makes it to this weekend, I'll go up again then.

151 fever & it's all about me rant

The nursing home called my mom at 2:30 last night to tell her my father's fever had spiked back up to over 104 and they HAD to bring him to the hospital (yes, the same one I told them yesterday not to bring him to!) for emergency hydration. They have no one on staff who can set an IV and couldn't find anyone to come in and put one in.
My guess is it's the MRSA. It's obviously not under control.
I was going to bring the dog up today to see him, but the dog is still sick. So my original plan was if the dog was sick, I'd go to the gym today and bring the dog tomorrow. But now I've got to go up there and find out what the hell is going on.
(now begins the rant)
Last night I went to a writing meeting for NaNo and did terrible. This is my worse year ever. I didn't even write a thousand words yesterday. I am feeling really discouraged about my life in general. I've got to stay strong, support my mother, support my grandmother. My husband works full time and goes to school so I have to be a good wifey-poo at home, and I suck at that, I'm not domestic, I don't clean or cook.
But who is supporting me? I think I've got a pretty sad life when the only people who understand me are strangers I've met online. I have one friend whose sister died of dementia in her 40's (from complications from "successful" brain tumor removal surgery when she was a child), and another whose grandmother is stage 7 with a MRSA infection, and other than that, people just don't seem to get it. And they don't want to talk about it endlessly with me, or really at all.
I'm feeling whiny and selfish and childish. My father is dying and yet I have to go home and wash the dishes and feed the cats and pay the bills while my husband plays World of Warcraft. I still have to do everything for myself as well as everything for everyone else. When does the help come, when do loving people start to support me and take care of me? Where are the offers of food so I don't have to cook (and make more dishes to wash) or go out to eat (and run up my credit cards)? There is an inverted pyramid of support going on and I am the bottom point. Eventually I am going to crack, or the weight of my responsibilities are going to drive me into the ground.
I haven't got much more left to give. I can barely drag myself out of bed in the morning. But I am selfish for asking, how dare I ask, because my MOTHER needs me, my FATHER needs me, I can't ask for help for myself when they need me. But if I go to the gym, if I go to a writing meeting, how could I do those things when my father is dying? Why am I not at his side?
I don't know, okay? I don't know anymore what to do, what to think, who to turn to. My friends have pretty much all taken off. They have their own lives and their own problems and they don't want to deal with mine. I have no brothers, no sisters, no cousins. I have a husband who has no time for me, and that's it. I have a low-paying job with no sick time and no compassionate leave. I can't take time off or I lose income, I can't rearrange my hours to make up lost time if I do leave early or take a day off.
I am drowning, I am choking, I am lost. My father is dying but if I leave work early to go to him, that's almost a hundred less dollars in my pocket. My mom's got no money left anymore to help me out because she's got to spend down to 1600 ridiculous dollars so my dad can go on Title 19 but she can't just GIVE the money away, she has to account for where it goes--she was going to buy me a new car (mine is 14 years old with 135K on it) and the lawyer said no, that wouldn't be allowed.
Everything is such a mess. There is no help for me anywhere. Kind words from strangers online, silence from so-called friends. It really is true that if you laugh the world laughs with you and if you cry you cry alone. If I dare to laugh, how could I be jolly in such a situation, when my life is a mess. Crying is understandable, but no one cares, no one wants to hear about my childish selfish problems. They say you are strong, you can do this. But my strength is gone and I can't do it anymore.

150 slow bleed & sick dog

The nursing home just called me to ask about bringing my father to the hospital for a follow-up neurology appointment. The appointment that was canceled last week, the one we said was useless and stupid.
They are sure my father has a slow bleed deep in his brain. A neurology appointment would confirm that. To get his brain scanned, they have to load him into an ambulance and drive him half an hour to the same hospital that's mistreated him in the past and leave him lying around for god only knows how long before they get to him. And if the scan shows a slow bleed, guess what?
Nothing can be done. They can't/won't operate on someone as bad as him. There are no medicines for it.
So why bother? Why bother with the expense? And the stress on him? It's pointless.
I called my mom to tell her that I reiterated our position on the appointment, and to ask her to bring me the dog tomorrow so I can bring him up to see my father.
And she told me the dog is really sick, feverish and lethargic and being brought to the vet any moment.
You know what? I don't need this. I have a dying father and a dying cat. I'm enrolled in a really difficult 12 week programming class. I'm trying to work out more in preparation for my vacation to Mexico in 2 months (2 months from today)--I want to be able to run around in the jungle and climb pyramids without getting out of breath. And I'm doing National Novel Writing Month. There better not be anything wrong with that dog. He better not die. I can't take it.

148 A superbug is eating my daddy

Turns out that while my dad was in the hospital last time, he picked up that nasty drug-resistant infection (MRSA-the so-called Superbug). No one bothered to tell us this of course. So that explains his 102 degree fever for almost a week that they can't get to come down. My mom's uncle died of a MRSA infection after a hip transplant, and so did one of her cousins after a different surgery.
My mom and I went to a care consultation meeting yesterday, to talk about his state and what to do. We advocated getting rid of his Alzheimer's medicine and reiterated that he was supposed to be off his heart medicine by the end of September. But the staff doctor there won't take him off the heart medicine, and he has to see a psychiatrist for a psych consult before they will take him off the Alzheimer's meds. Is that not outrageous? He is almost totally non-functional. What is the point of giving him these medicines? Let him have a heart attack! Let his brain rot more! Can he really get any worse without dying? (Please, those of you who know the answer, kindly refrain from telling me if the answer is "yes"!)
His eyes are going in two different directions and one of them has gone all blood red. The head nurse thinks he is still bleeding from the intracranial hemorrhage--brain swelling and pressure would do that to his eyes. He was unresponsive, head down as far as it would go, drooling, both times we went to see him. He held our hands for a moment. His skin was so hot it was uncomfortable to touch.

147 this may be it, revisited

My dad's been running a temperature of 102 for several days. The nursing home thought it was just another UTI but the infection is not responding. They wanted to take him back to that horrible hospital. My mom and I said NO. I was on my way up there for a routine visit when my mom called. She told me to make the decisions.
The bottom line is, he's got some kind of massive infection. They don't know where or what. They are waiting for lab work to come back so they can see exactly what antibiotic to use. He is not swallowing his food at all, nor is he drinking. So I approved an IV for fluids and medicine, antibiotics, painkillers and that's it. I told them to take him off all his heart medicine and his Alzheimer's medicine--at this point, it's a total waste to give it to him. No feeding tube, no transport to the hospital.
I feel better being able to make decisions, even if they are wrong.
Like on Sunday, he was unaware of my presence today. I tried to talk to him, to tell him the Red Sox won the world series again, but he just grimaced and pushed my hand away from his arm. When I was talking to the 2 nurses about his future care, he seemed sometime to try to aim his eyes at my voice but he couldn't seem to focus or connect in any way. I tried to hold his hand but he pulled away.
He was in bed, his arms drawn up like a burn victims, half curled up, his head to one side. His right eye is drooping again, hardly open. He is so thin his forearms are bigger than his upper arms. He's still got his tan on his lower arms from this summer.
You know what makes me most sad? My whole life the Red Sox, my dad's favorite baseball team, were only in the World Series once, in 1987, and they lost (to Chicago, I believe). Then after my dad got diagnosed, they not only made it to the World Series again, they won in 2004 for the first time in 86 years. My dad hardly reacted. This was a man who would throw wadded up napkins at the screen whenever someone scored against the Red Sox or prevented them from scoring. They won, and he just sat there. Now they've won again, and he doesn't care. I'm no sports fan; I think it's stupid. But it was always important to my dad, and my memories of summer are filled with scratchy AM radio broadcasts of baseball games and Amile motor oil commercials (I think that's how it's spelled). All my life my dad wanted the Red Sox to win. And now it happened twice and as far as he's concerned it may as well have not happened at all.

146 "I'm shocked"

My husband came with me yesterday to see my dad. He was strapped in the wheelchair, with his favorite aide giving him orange juice (so thickened it was more like a paste). His gaze wandered to my husband's a few times, but there was no recognition there, no spark. He looked at me only once, same thing.
The aide said once in a while he tries to talk but he can't. I talked to him and he had no response. I didn't even feel like he was ignoring me. It was like I wasn't even there. Once in a while he would grimace and I'd try to joke about him making the mean face. It was a form of the mean face, to be sure, but more like a tic or random expression than anything with any meaning.
In all these years (what, only 3? I thought it had been at least 10), I've never cried in front of my father over his condition. It's bad enough to be sick and know you aren't getting better; you don't need to see your loved ones grieving for you.
But yesterday I cried. I sat there and held his hand and knew he had no clue who I was, or that I was familiar, or that he even knew he was holding my hand. The aide told me they are doing occupational therapy with him, trying to get him to be able to hold up his head again.
Two months ago he was dressing himself, taking walks, feeding himself, using the bathroom. Now the goal is for him to hold up his head? What the fuck?! Why didn't he just die from the intra-cranial bleeds like that lying asshole doctor said he would?
We stayed about half an hour, then the aide had to feed him lunch and we were in the way. As we walked out, my husband said how shocked he was to see how badly my father had deteriorated in such a short time.
It's a combination of things. Being moved from home, back and forth from the hospital, two bad head injuries, continuing kidney failure. Now he's got another UTI, probably from having a catheter in for almost 2 months.
He's got zero quality of life. People who are against euthanasia should go visit my dad and then convince me he wants to live.

145 Portrait of Stage 7

This is my father now:
He sits, tied in his wheelchair (otherwise he falls out). His head is down, his chin almost on his chest. His chest is wet with drool. He speaks no intelligible words. (Once in a while, he may utter a "no" "yeah" or "hi" but it's very rare and not always pertinent.) He is aspirating his food and drink. He will not hold my hand or even look at me. (I tried to make him look at me and he took off his glasses.) He is on a catheter, in diapers, in acute kidney failure.

This is the stage 7 description from the Alzheimer's web site:
Stage 7:Very severe cognitive decline (Severe or late-stage Alzheimer's disease)
This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.

• Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered
• Individuals need help with eating and toileting and there is general incontinence of urine
• Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

I haven't been to see him for a few days. I'm going to try again tomorrow. It's a long drive to be turned away at the end by a man who may be angry or may just be utterly confused.

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.

143 thank you

This is the thank you note I sent to all my friends who offered me assistance, prayer, love, etc., over the last few days, and that includes all the bloggers who posted here and emailed me privately:

I want to thank all the people who took the time to respond to my earlier note with prayers, light and energy for my father and my mom and for me. It has been an extremely difficult few days.

My dad is now under the care of a neurologist, who told me yesterday he had two separate bleeds, one behind his forehead and one on the opposite side of his head above his ear and that they had stopped bleeding and would be reabsorbed. This contradicts what we were told in the ER—that it was one bleed and it was in the center of his brain and that it was fatal. This new doctor said most definitely the seizures were caused by the head injury and are not an inherent part of his Alzheimer’s. But he is going to be on anti-seizure medication for 6-12 months just in case.

So yes, this doctor believes my dad will still be around in 6-12 months.

Dad has lost a lot of function. I’ll detail it all on my blog. But he’s still alive, enough to try to smile at me and say “hi” and hold out his hand to me when I come to see him.

And that’s all anyone can ever hope for in life, right? For your loved one’s eyes to light up at the sight of you.

Thanks again,

Bert

142 what's going on

My dad is still alive in the hospital. He regains consciousness for maybe a minute or less, seems like he recognizes me, but his speech is almost entirely gone, his coordination is gone, and he spends most of the time with his eyes closed, mumbling wordlessly, his hands out like a blind man searching. He'll hold my hand, but not as if it's a hand, or my hand in particular, just something to grab onto--he actually squeezes pretty hard. Yesterday his head was still bleeding on the outside where they put the stitches in so I have to assume it's still bleeding inside too, but I don't know. I haven't talked to a doctor since the ER one on Thursday.
I went to the funeral home on Friday and planned his funeral, picked everything out, got a price, etc. One less thing for my mom to do--I dropped all the literature and pricing off at her house. It was awful to do--I can't imagine having to do that when someone who has not been ill dies without warning. Overwhelming, all the choices and all the money you have to spend.
Even more awful, when I came out, some absolute idiot had put fliers for a new restaurant on all the cars in the parking lot--the cars of people there for the 2 wakes being held. I wanted to call that restaurant and scream at them for being insensitive. I'll NEVER eat there, that's for sure.

141 this may be it

I went to the hospital emergency room to see my dad. I dosed myself heavily with Dayquil first. He didn't even know I was there.
He was on a backboard. They had to put stitches in his head. His mouth was filled with blood where he had bitten his tongue and the insides of his cheeks. The blood was all over his teeth. Stupid, but that upset me to see. While I was in there he went into another seizure. I have parrots who have seizures and I can recognize them. His eyes went crazy, his jaw set, he started making awful noises. I said, "Is having a seizure?" and the nurse said "No, he's in terrible pain" (like that's better?) but then his legs came up and his back arched and I knew it was really a seizure.
I had to leave the cubicle to give them room to work. They suctioned out his mouth--so much blood, they left the tube full of gore hanging there--and then started talking about his oxygen level and looking for an oxygen bottle for him-the bed didn't have one and they had to run and find one, then his blood pressure went through the roof. They were supposed to do an xray but instead did a cat scan (or some other brain scan). Came back with really bad news. He's got a major bleed really deep in his head. They offered to call a neurosurgeon but said even if he didn't have AD it's a really bad place, not easy to get to. It might stop on its own...but he's on blood thinners. I asked, not facetiously, if they have a blood thickener. The nurse said there is no agent that can cancel out the Plavix. (However you spell it.) My mom asked right out "is this going to kill him" and the nurse said "probably." We agreed on DNR, no feeding tube, none of that nonsense. If it doesn't kill him he will be a vegetable so of course we want it to kill him but it's still my dad, you know? It's my Daddy! I'm not even 40. [edit: I said "nurse" here because I thought at the time that's what she was, but she was a doctor. It's so hard to tell when everyone wears the same scrubs and no name tags.]
I called my best friend, not like she can help, and she just felt awful. Her dog is really sick and she's probably going to have to put him down, and I was crying over her dog and she was crying over my dad and telling me not to worry about her stupid dog. But I have room in my heart to mourn for a dog she loves just like she can mourn for my dad that she hardly knows.

135 hospice?

Always there are problems and more problems. Nursing homes don't want my dad because he's in restraints. Because he's not eating. If he was home, he would be eating and not confined, but he can't come home because he is too violent.
Today he was asleep. The aide said he was up all night. That's not unusual. He woke and recognized me, said hi. The aide, nurse and doctor all said as long as the dog is "controlled" he can be brought to my dad's room to visit. So that is good...he is a little dog, easy to hold, but a barker. Hopefully he won't bark when my mom brings him.
He was back in 4 point restraints, with IVs in both arms, still on a drip due to his insufficient ingestion of food and fluid. My mom said yesterday he was out of bed, in the chair, had taken his medicine and eaten, wasn't tied up. Today he had some toast and took his medicine, but I'm not sure why he was tied up again.

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I am going to digress here, to something I was going to write about yesterday but never got the chance to.
My dad wants to die. He said so again, last Saturday, when he realized he wasn't going to be able to come home again. He has said so many times: I'll kill myself. Just shoot me. Just kill me. He is aware of his condition in a way people believe Alzheimer's patients are not. I have written about his list of things he knows he can't do anymore.
So it comes down to a moral dilemma. My dad wants to die. He stopped eating. He said, very clearly, "Kill me."
But what do I do? I go there and make him eat. I make him take his pills. Because I am a coward, I guess. Because saying, "yes, my dad is unhappy and he wants to die and I agree," is one thing, but doing it is another. Just like when he was bleeding to death from the cut artery, I stopped the bleeding and we called 911, and the other time I did direct pressure and brought him to the hospital (this same one, actually) rather than let him bleed to death. Helped him without thinking "maybe it would be better to stand back and do nothing."
And now, apparently, the time has come to shit or get off the pot, to use one of Aunt Bert's expressions.

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While my mom, my husband and I were there today, a doctor came in. (Her tag said "hospitaler" or something weird like that, but she said "Dr" in front of her name, a long Middle-eastern one.) She tried to wake up my dad to talk to him, but he was pretty sound asleep. I told her of my concern over his tongue, and she said she'd have an oral anti-fungal applied even though she didn't see any signs of a mouth yeast infection, and that that treatment would keep his mouth wet.
She was concerned that he only ate half a piece of toast and some juice for breakfast, along with his pills. She told my mom she wanted to put in a feeding tube. My mom and I both said no. My husband, who doesn't think he has a say in my dad's care, feels that he'll get better once he adjusts to his situation and will start eating again.
My dad doesn't need a feeding tube. Someone patient can get food into him. I can get food into him. Not a lot, but enough to keep him going until we know what's going to happen. Feeding tubes are gross. He can't communicate well as it is; what's going to happen when he has a tube down his throat? He'd totally flip, and once those tubes are in, it's a court order to remove them.
So the doctor jumps ahead, way prematurely in my opinion, and says she wants to stop the glucose drip. She is aware of my father's death wish. She says she'll stop the glucose drip and we can take him home to die and hospice will come in.
First off, everyone has said he can't go home. Second, once he's home, guess what? He'll eat. And regain some of himself. And beat the hell out of my mom again.
I said no, don't stop the drip. Give him time.
The doctor said that we are prolonging the inevitable, that we are torturing him, and we should let him go, that we could send him to the hospice facility in Branford (? I think), that he'd be dead in a week or so.
I felt very pressured and uncomfortable by the whole situation and totally of two minds. The logical mind that says dad is miserable living like this, I would be miserable living like this, anyone would be, and why prolong it. (This is coming from someone whose cat was diagnosed with lung cancer in April and who hasn't put the cat to sleep yet. Although if you saw the cat, you'd understand why.)
The non-logical (emotional) mind says that unless he is beating up my mom, he is more or less content. He loves his dog and cat, likes to sit outside and look at the birds and butterflies and flowers. In that respect, he is not so different from my cancer-cat, who has slowed down, but still eats and purrs and interacts with us and is in no obvious pain. My cat is not living his life to 100% but he's not suffering either, and so I let him live.
My dad has begun to suffer, and it's a direct result of being in the hospital, which is of course is a direct result of his actions last week, hurting my mom and then the doctor and security guards. If he could go home...but he can't. If he could be in a different environment, where he could walk around and see his dog and cat and not be tied up, he wouldn't be suffering. But we can't get him to that place. And whose fault is that? Who do I blame? Those who told my mom to call 911 and have him transported when he hurt her next? Those who promised he would be treated kindly, evaluated professionally and put into a dementia ward (none of which happened)? My mom and I for believing those people?
One local nursing home with an Alzheimer's/Dementia ward sent my mom admission paperwork. $298 a day for Alzheimer's care, about $20 less for geriatric only. Every month there costs more than I make in a year at my current job. And of course, we don't know if they take him when he's not really eating, when he's not been properly evaluated by a trained Alzheimer's psychologist/psychiatrist.

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Now I want to take some time to address some comments that have been left by you who are reading this.

• Suing the hospital: the elder care lawyer said it wasn't worth it. So it's not happening. But I am still taking lots of notes.
• PCP: I did call my father's PCP. He is also my doctor, my mom's doctor, my husband's doctor, my grandmother's doctor. I was shocked at the apathy of the woman who took my call, who has known everyone in my family for many years. She said the doctor no longer goes to any hospital and has no privileges anywhere. I said that I needed help, that my dad wasn't getting his medicine, and she replied that we had to talk to whatever doctor he was assigned at the hospital. She was barely listening; I know she wasn't taking notes and I am doubtful if any record of my call made it into my father's chart or into the doctor's ears.
• Alzheimer's foundation: I did call them, the same day I called the PCP. The woman I spoke to was very nice, but she really couldn't help much.
• Veteran's: My dad was in the military but he dropped out for health reasons. He wasn't in long enough to qualify for anything, by some ridiculous number like a week or two.
• Masons: Not sure why one person directed me to "attack the masons". My dad is not a mason. He is not in a Masonic hospital. He was going to go into one, but right now they won't take him.
• Calling the media: I'm physically unattractive and putting me on TV would not be a wise move. What I look like would detract from what I have to say.