Friday, December 28, 2007

165 print of online guestbook & obit

My father's online guest book comes down today, so here is the screen print. I also put the screen print of his online obit. It is hosted on Flickr and you can click here to read it more clearly.

164 First Christmas with no dad

We had our first Christmas without my dad. As most of you know, I'm a pagan, so I don't celebrate Christmas as a holiday--no tree or anything--but every year I do go to my parents' house and have a big lunch with my husband's family and my grandma, pretty much like Thanksgiving.
Thanksgiving was weird because my dad was alive, but not there. For Thanksgiving, my mother-in-law brought mounds of shrimp cocktail, which was what my dad always ate (he'd eat just shrimp cocktail if given the chance!), and mostly it just sat there. I felt awful because I wanted to pack it up and bring it to him, but of course he wasn't eating anymore and died a few days later, so there was no way he could have enjoyed the shrimp even if we pureed it.
Christmas was sadder, because he wasn't alive or there. And there was the plate of damn shrimp. Does she not learn? Only my dad ate it. My mom had been halfway through decorating for the holiday when he died, and she thought it was ghoulish to have everyone over after the service with her happy decorated house but it also felt stupid to take it all down. My grandmother wanted a tree, so she put it up.
But of course no one really talked about my dad. I don't think people know what to say. My mom did say that she meant this year to be his last Christmas at home--she was going to start looking for a nursing home in January. So none of us knew last year was his last set of holidays. . . but then again, you never know, do you?
It was also weird because it was basically the 1 month anniversary of him dying too--Nov 26 to Dec 25.
His wedding ring is still MIA. Months ago, he went to bed with it on one night and woke up without it. My mom had stripped the bed, shook out the sheets, looked under the bed and still hasn't found it. She did find his old Red Sox hat (the one I wanted to burn with him) and it's on top of his cremains box on her dresser. The hat was hidden somewhere bizarre; I forget where she told me she found it.
My husband asked me if I missed my dad and I said no without really thinking about it. And he gave me this look, like "how could you say that?" and I explained, also without thinking about it: "He's been gone a long time."
I have his obituary tacked on the bulletin board next to my desk at work and I just love the slightly goofy picture of him I picked, of him hugging his cat. Mostly when I look at the picture, I smile.
I've talked about grief in general and my grief specifically with some of my friends. Grief is a selfish thing. We're sad because we don't have the person anymore. We're not sad because that person has lost everything s/he loved, sunsets and soft kittens and cold beer (although I'm sure they have plenty of the latter at the Elsewhere Bar)--and that's the true tragedy--but because we have a hole in our lives shaped like the one we've lost.
The hole in me where my dad was isn't even dad-shaped. It's just a blob. As my dad wore away, I became less dependent on him. I needed him less because I was forced to go to others for the things he used to do for me. (Buying a car without him is going to be a nightmare. I'll miss him that day, that's for sure.)

Thursday, December 13, 2007

Space Aliens now have Terry Pratchett's brain too

Yesterday, one of my favorite authors, Terry Pratchett, announced that he has early-onset Alzheimer's. (screenprint of announcement) Honestly I think I cried harder over that than I did my father's diagnosis. You know why? Because now I KNOW. With my dad, I didn't know. I knew only what I now call "Hollywood Alzheimer's" (like in The Notebook), which was a sad, gentle thing, with moments of total lucidity and memory recall. Now I know the truth--the confusion, the frustration, the fear, the violence, how it feels when your father looks at you with no recognition and says "Why are you here?"
Terry Pratchett, being a funny and upbeat sort of guy, doesn't seem overly upset at the news. In his announcement, he says, "We are taking it fairly philosophically down here and possibly with a mild optimism....Frankly, I would prefer it if people kept things cheerful, because I think there's time for at least a few more books yet :o)" He concludes with, "I would just like to draw attention to everyone reading the above that this should be interpreted as 'I am not dead'. I will, of course, be dead at some future point, as will everybody else. For me, this maybe further off than you think - it's too soon to tell."
I have read about half of his Discworld books and own about a quarter of them. They are wonderful, funny and entertaining. My hope for him, if I'm allowed to hope for him, is that as the disease progresses, he thinks he lives there in Ankh-Morpork and forgets this world, rather than vice versa.
What a terrible fate to befall someone who has delighted so many people.

Tuesday, December 11, 2007

Alzheimer's gifts (patients and caregivers)

Here's a link to a store which provides all kinds of items suitable for gifting to someone with AD or that person's caregiver.

163 more on Haven Healthcare

(To read the scanned article, go here. The picture posted on the blog is low-resolution.)
Basically, to sum it up, Ray Termini (brother of my father's friend Rick) sucked millions out of the Haven Healthcare facilities, leaving them unable to pay their bills and filing for bankruptcy.
He took "$15 million in assets from nursing home businesses for 'personal investments'," plus he gave $5 million to his wife so she could buy a $1.5 million yacht and several rental properties in Bristol, Seymour and here in Wallingford. His wife, with those funds, bought a $650,000 home in Palm Bay, Florida, and of course Ray bought his record label for $2.1 million.
The CEO claims that he took no "government money" and therefore did nothing wrong. I guess it is perfectly legal to suck a business dry and then claim bankruptcy from the deck of your yacht moored off the dock of your Florida mansion.
The article closes with "The nursing home chain has had trouble paying its bill in the last two years. One home ran out of heating oil and others lack supplies such as juice and bandages."
Maybe it's better my dad died rather than keep living in such a place.

Thursday, December 06, 2007

162 the quaint custom of mourning

I always thought the old custom of wearing "mourning" (specific colors of clothing for specific lengths of time, depending on who died) was a silly thing.
But I kind of wish it was around now.
I feel very emotionally fragile some days. I have problems in public, where it's loud--last night I left a restaurant after eating less than half my meal after a really boisterous family was seated next to me. I dislike children on a good day--and the last few weeks haven't included many of those.
This family featured a baby who periodically let out amazing whooping screams. At one point the kid puked and the parents were acting like the child had presented them with a gift. Everything the kid did--good or bad--the parents rewarded with claps and loud positive exclamations. Besides the fact that it's disgusting to sit in a restaurant next to a puking baby, I just couldn't take the noise. When they started to loudly sing along with a Christmas carol playing in the background, I asked for my check and a box and fled.
I was thinking that if I was wearing mourning, and the custom was observed still, maybe people would understand why I am quiet and fragile and not really interested in social interaction with strangers. That my lack of interest in my meal doesn't mean it wasn't cooked properly or doesn't taste good. Maybe I wouldn't get stuck next to screaming puking babies when I just want to eat quietly by myself and read my book.
I did some research on mourning--the custom, not the emotion. Here's what I found:
(from Wikipedia) Wearing dark, sombre clothes is one practice followed in many countries, though other forms of dress are also seen. Those most affected by the loss of a loved one often observe a period of grieving, marked by withdrawal from social events and quiet, respectful behavior. People may also follow certain religious traditions for such occasions....Women in mourning and widows wore distinctive black caps and veils, generally in a conservative version of the current fashion.
Of course, I already wear mostly black/dark clothes all the time anyway. But I'd wear a tasteful little black hat with a veil. I look really good in hats with little veils. Look at this lovely hat; if only it was all black.
And at the same time, I suffer from terrible guilt. I'm the one who talked to the hospice nurse and gave the directions for my dad's final course of drugs, the ones that sent him from his body forever. Maybe he could have gotten better. (I know he couldn't, but that little voice in my brain, the nay-saying voice, says differently.) Maybe I shouldn't have told my mom to call the cops when my dad beat her up. I should have done more to learn how to deal with his violence instead. We shouldn't have left him alone in the hospital that night so he could fall and start himself on the 79 day path to his death. (79 days. That's all it was. September 9 to November 26.)
And I feel guilt because I'm not crying all the time. Because on Sunday I went to a party and laughed and had a good time, exactly 7 days from the last time I saw my father alive. Because when people ask me how I am, I tell them I am all right. Because I am. These dark quiet moments come on me suddenly but they don't last for more than a couple of hours, and even them I'm not usually SAD, I don't cry or anything. I just feel hollow and fragile, like I can't navigate through the world properly anymore.
I have my dad's obituary on my desk next to me at work, and I look at the goofy picture of him I choose, and I smile at it. I smile at that father, who was barely in Alzheimer's. I miss that father, but he's been gone so long already. I don't miss the tortured, thin, feverish man I last saw 2 weeks ago. He was no father to me. I went to see him because I hoped some spark of my father was in that body, but I don't believe it was. Even if my atheist friends are right and there's no heaven, no afterlife, no Elsewhere Bar, surely dissolving into the universe has to be better than the tortured last few weeks of my father's life. To be everywhere and everywhen all at once...well, that's the definition of god, isn't it?

Friday, November 30, 2007

161 Eulogy and service (with photos)

This is the eulogy I wrote/read for my father. I could barely read it, I was crying so hard. Everyone said they were fine until I got up there, and then I made them cry. That wasn't my intent. I had read it over so many times that I thought I would be okay. But I wasn't. Standing there, with the picture board, the flowers, and of course the marble box with my dad in it, was very different from sitting on the couch with my cats.

I tried to come up with an analogy for Alzheimer’s, something simple yet expressive, to start this out with. I thought of something from my favorite book, about how the people around us are the chisels which carve us into who we are, and that’s not bad—we are indeed shaped by those around us, and my dad influenced me, obviously, very much. But I’m not here to talk about me. I want to talk about my father.
He had a hard childhood. His aunt, Aunt Bert, took him into her care and did her best to make that childhood bearable. He grew into a kind man, a quiet man, a good man. He wasn’t flashy or loud; he didn’t hold your attention. He was a background kind of guy. I never realized how much he did, invisibly in the background until I moved out. I found out the garbage does not magically take itself out every night, the cat box doesn’t get scooped and there is no Soda Fairy to make sure there are always a couple of cold bottles of soda in the fridge. So when you come to my house, and there’s no cold soda, the cat box is dirty and the garbage can full, that’s because my dad doesn’t live there!

Seriously, I have learned to scoop a cat box and put soda in the fridge, although I still have trouble with the trash. But it really gave me an appreciation of my dad that maybe I didn’t have growing up.

I can remember that, when I was really little, in the living room we had 3 lights on a pole, and he used to make shadow animals for me and tell me stories about them, especially Jerry Giraffe. He would come home after a 12 hour day at work and still have time to tell me those silly stories, and when he wasn’t there I’d try to tell them to myself, and now I’m a grown-up, and I still tell stories. When I cried because I wanted my daddy to stay home with me, he’d say “I’m going to makes some dimes for you,” and ruffle my hair before he went off to work.

He was a successful car salesman, winning salesman of the month and year awards many times. I think it was because he wasn’t a high pressure salesman. He took the time to explain everything carefully, lay it all out, and let people make their own decision. And he remembered. If you bought a car from him, and a few years later he saw you in Stop and Shop, he’d know what car he sold you, what color it was, probably what you traded in, he’d know your name, and probably your spouse’s name. In fact, one time he was at a car show, and a guy was showing a car my dad had sold him brand-new, and he had the original sales paperwork with my dad’s signature on it…and my dad remembered him, even though it had been more than 20 years.

People like my dad—quiet people who get the job done without any fuss–are really the cogs and glue of society. You rely on them without realizing it. They are strong, but they never complain about their burden.
Even after he got Alzheimer’s, he didn’t complain. He apologized. I’m sorry, he’d say. I can’t remember things anymore. I can’t talk so good anymore. One day, I asked him for his opinion on something, and he said, deep down inside, I don’t know anything anymore.
He didn’t know who I was, but he knew that if it was dark out, he should walk me to my car with a flashlight “so nothing bad would happen”, and then he would shake my hand and ask “when are you coming again?” His instincts were always to be helpful, to hold doors and carry packages.
He was still my dad, but blunted, truncated.
That brings me back to my analogy. I imagined a really beautiful, perfect statue, left out in the wind and rain for centuries, to be worn away, until it’s only retained the shape of a person, not any of the individuality. That’s what Alzheimer’s did to my father. It wore him away, all the sharp edges and crisp points that made him Bob Rizza, who loved his family and his pets and his raspberry bushes, and turned him into a fearful person with a vague and confused stare.

I can only hope that all that was worn away from him in the last few years has been restored to him on the other side, along with his loved ones that were already there.
The last time my dad really spoke to me was a few days before his second fall. He was in the hallway of the nursing home. I walked over to him and he threw his arms around me and hugged me and said, “I love you.” He didn’t want me to leave. I asked him to hold my keys and he took all the keys off the ring and returned the ring to me empty. When I fixed that, he pushed me back into the chair beside him and said “Not enough.”
No, dad, it wasn’t enough.

I asked two of my friends to read poems. Chrissy, a writer friend of mine, read this:

by: Christina Rossetti (1830-1894)

REMEMBER me when I am gone away,

Gone far away into the silent land;
When you can no more hold me by the hand,

Nor I half turn to go, yet turning stay.

Remember me when no more day by day

You tell me of our future that you plann'd:

Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while

And afterwards remember, do not grieve:

For if the darkness and corruption leave

A vestige of the thoughts that once I had,

Better by far you should forget and smile

Than that you should remember and be sad.

which I got from this site.
My other writer friend, Lizzie, has a grandmother in end-stage Alzheimer's, and she cried through this bit of an old Irish song, "The Parting Glass" when she read it:

Of all the comrades e'er I had, they're sorry for my going away.
And all the sweethearts e'er I had, they wish me one more day to stay.

But since it falls unto my lot, that I should go and you should not,
I'll gently rise and softly call, goodnight and joy be with you all.

It is really a drinking song, but I read it a few years ago and thought it sounded more like a funeral song to me.

And oh, the people who came! Lots of my friends, of course (and you really find out who your friends are when someone close to you dies and you see who rallies to your side and who vanishes), old co-workers of my dad, my mom and me; neighbors; family, friends, and people you'd never expect: the plumber. The accountant. Two ladies my parents met while walking. My best friend's parents and her mother-in-law. There was even one person my mom and I didn't know at all. I couldn't understand who this woman was kneeling in front of the picture display and crying. My mom didn't know her either. I felt awkward saying "who are you?" but I asked anyway. She owns a store next to my father's friend's store, and my dad used to help her do postcard mailings in exchange for cookies. She said she just did a mailing and was thinking how she missed my father's help, and then she heard that he died. My mom and I both knew she sent home cookies with him, but we'd never met her, and she was genuinely sad to hear about his death.
And the refrain we heard over and over was "He was such a nice man. He helped me so much. He didn't deserve this."
My mom had thought that there wouldn't even be ten people there, and the room was filled when I was reading (sobbing through) my eulogy. And some people had came and left, just saying hello and not staying. I just tried to write down from memory everyone that was there and I came up with 45 people I could name, plus some neighbors whose names I don't remember. My mom counted 50 names in the register, but some I listed by memory didn't sign. Call it 60. Over half a hundred people came to say goodbye to my father. Plus all you online, who never met him OR me. Call it a hundred, then, since I get 50 hits a day on average here.
My grandma, of course, had to make it about her. She didn't want to go and "be a burden." She'd be "in the way." My mother basically forced her to go, and she sat there at the end of the row with her "puss" face on because she didn't want to be there. My best friend left early to go back to my mom's house, start the coffee, deal with the dog and let everyone in. She brought my grandma home. Later on she said to me, "I never want to have your grandmother mad at me!" Apparently all my grandmother did was complain all the way home (luckily only a mile). And then when the dog barked at Beth, my grandmother made a huge fuss over that, saying the dog was going to bite her. Beth has dogs, knows dogs, and Ace has met her before and not bitten her--in fact, he likes her. Beth was happy to practice her sign language on my father's cousin and her husband (she is deaf from an illness in her infancy; he is deaf from a car accident when he was 12) and to be a hostess--she excels at things like that. She is also the one who did most of the work on the memorial boards. I'll devote an entry to them later.
The minister had a little too much God and Jesus in his service, but I just ignored most of that--take what you can use, leave the rest. He read two really nice poems, one about remembrance and The Dash. (When I find out the info on the other poem I will link to that one too.) My mom enjoyed his service, so that's good enough for me.
The flowers were pretty, but not at all like we described/ordered, and they were $300, so that made me crazy. I designed a pair of tall, thin spare bouquets, with a mixture of bamboo, greenery, and 3 white lilies in a bud vase. Instead, my pair was 5 lilies each with a bunch of pine sprays, and the bamboo was hidden, and the vase was big and clunky, and the arrangement was not at all thin (although it was tall). My mom wanted a long, thin spray of flowers--lilies to match my pair of vases and red roses-- to put in front of the cremains casket, and we said "nothing that sticks up to block the pictures". It was huge and clunky and stuck up everywhere and was so big it couldn't be put in front of the marble box. :(

Wednesday, November 28, 2007 my readers

So many of you post anonymously, or when I click your Blogger link it says your profile is disabled. I would like to answer you sometimes. If you are a frequent poster, can you send me an email and tell me who you are? I won't share your email address with anyone. I just want to be able to respond.
Write to me directly at geverabert at yahoo dot com. If you want your letter to me shared on the blog (without your name) just let me know.
These stories were meant to be shared. Mine might be over, but I'll keep this blog going, commenting on news, research, other blogs of note, etc. No one should be alone through this, and if I can hold someone's hand in the future, I will.

160 Obituary

Here is a link to my father's obituary online. There is a guestbook there, but entries only stay online 1 month, so I'd rather have people sign here.
Here is the text, for anyone who comes along in December 2008 to read the blog:

WALLINGFORD - Robert R. Rizza, 67, of Wallingford, died Monday, Nov. 26, 2007, at the Haven Healthcare Center in Rocky Hill. He was the beloved husband of Ann-Shirley Nana Rizza.

Born in Meriden, Aug. 10, 1940, a son of the late Salvatore and Agnes Ruth Rook Rizza, Bob had been a Wallingford resident for over 40 years. He was a peacetime veteran, having served with the U.S. Air Force, and had been a car salesman at Meriden Hyundai and Valenti Chevrolet for many years.

Besides his wife, Ann, he is survived by his daughter, Roberta Piedmont and her husband, William of Wallingford. He was predeceased by his beloved aunt, Bertha Audette and his uncle, Richard Audette.

His family will receive relatives and friends in The Wallingford Funeral Home, 809 N. Main St. Ext., Wallingford, Friday, from 6 to 6:45 p.m. Memorial funeral services will be held in the funeral home at 7 p.m. Interment will be private. In lieu of flowers, gifts in his memory may be sent to the Alzheimer's Association, 279 New Britain Road, Suite 5, Kensington, CT 06037.
Flag Logo

Published in the Record-Journal on 11/28/2007.

I would prefer donations go to the Unforgettable Fund, because 100% goes to research.

Tuesday, November 27, 2007

159 aftermath

I feel bad for not feeling worse. I took yesterday off from work, but went in today. (I don't get paid vacation, sick or personal time.) Everyone was like, how can you go to work?
Well, how does it help to sit home? When I needed to not work was so I could go see my dad when he was alive. Staying home doesn't help him now, does it?
And I don't understand why everyone wants me to cry all the time. People who know he's died, when they see me, grab me and hug me and say sad things to me until I do cry. When I'm by myself, I'm okay 99% of the time. (Leaking a little as I write this.)
What people don't seem to grasp is that I have been in mourning for my father since the day I started this blog, in June 2003. I should be rejoicing and having a party that this veil of sadness can at last lift. I mean, I will miss my dad forever--I still miss my grandpa, 20 years later--but I don't have to mourn the chipping away of his essential self anymore. He's got that back now, and he's having a beer with Patty's father, in the Elsewhere Bar, and hanging out with all those dementia people who arrived before him. Knowing my dad, he's probably holding the door and shaking the hands of newcomers already, introducing himself and showing them the way. "I'm Bob Rizza," he's saying. "That's my daughter down there. She's writing about me."
I hope if he's watching me he's not too sad that I'm not very sad. I cried over him enough in the last 2 months, often when I was with him.
Last night I stopped by a meeting where a lot of my friends were, to get and give hugs. One of them asked me what my father actually died of. It wasn't Alzheimer's that killed him. I guessed kidney failure. When I was there on Sunday, his urine looked like molasses. And he's been in acute kidney failure since September. Someone spoke up and asked why he wasn't on dialysis. I answered, logically, "You don't put someone with Alzheimer's on dialysis." I don't remember exactly how the rest of the conversation went. Why didn't you get a different doctor that would put him on dialysis? Why wouldn't you put someone with Alzheimer's on dialysis? etc. I tried to explain that it's a terminal disease, you can't get better, ever, and no one is ever given extraordinary life saving measures like feeding tubes or dialysis. But it made me angry. Obviously she knows nothing about the disease (or maybe what I call "Hollywood Alzheimer's", like it was portrayed in The Notebook). I felt like she was judging me for the choices we made about my dad's care.
Anyway, because I was just writing about cause of death, I called the funeral home and asked. They were able to tell me the official cause of death was sepsis, UTI & Alzheimer's. So I guess in the end it was the MRSA that got him, huh? Because that's where it was--in the UTI. I know sepsis is basically a whole body infection--a couple of my parrots have died of it--when whatever infection you have gets into your blood stream. They weren't able to eliminate the MRSA, so I guess it's been lurking there inside of him all these weeks, slowly munching away.
Tonight I'm finishing up the picture board for the memorial service on Friday night. I'm going to buy flowers. I wrote the eulogy yesterday and I'm letting it sit for a couple of days before I look at it again. My husband said it was "sweet" which to me means sappy. I tried to put some humor into it, but he didn't seem to notice it. I'll put it here when it's reached its final form. And I'll link to his obit tomorrow and also post the scan from the paper.
Because we are having him cremated, we have to wait 48 hours--the medical examiner has to come and look at him first. It's strange to think he's in a drawer or something, waiting. When we were at the funeral home yesterday I gave the clothes I picked out (and what a row I had with my mom over that) and asked for his Safe Return bracelet back. The funeral director went into the other room and brought it right to me. It wasn't cold. Does that mean he's not in a fridge? I don't like to think of him decaying and stinking--that's why I went with cremation. I hate that my grandfather is still in a box inside a concrete vault, covered with mold, half liquefied, totally nasty, 20 years later. I like the old custom of burying someone in the ground for a few years, then digging up the bones that are left and reusing the ground, putting the bones somewhere else in a little box. But in our culture, that's repulsive.
So, about the clothes. I talked to my mom yesterday morning and said I had picked out some comfortable clothes for him, as I'd already mentioned on here, unless she had something different. She got all angry and started yelling at me: there's no wake. We aren't going to see him! Yeah, well, I can't bear to think he's being burned in his hospital johnny, okay? Even worse, with that damn catheter (which of course caused the UTI that killed him) stuck up in there. I want to remember him in his silly sneakers that he liked to color green with magic marker, with the bright green laces I got him (and he was SO grateful for them), wearing a nice soft pair of grey pants and a comfy green shirt. In my memory, he's got his Red Sox hat on, although that's not going into the fire with him.

Monday, November 26, 2007

158 it's over

Yesterday I went to see my dad. I spent over an hour with him, holding his hand, talking to (at) him, watching TV. He seemed very peaceful. No fever, no restlessness. He was just lying there, staring up and to the left.
When I came home I said that it looked like he was so at peace that I couldn't believe he would die this time.
At 4 a.m. the first call came from the nursing home. His temperature spiked to 105-106.
A little while later the second call came--his breathing was going.
At 5:20 a.m. the final call came: he died. What's the quote from Shakespeare that the old teacher said in Wit? Goodnight, sweet prince, and may angels sing you to your rest.

I guess I'll end this the way I started, with the Jane's Addiction quote I named my blog for. Was it only 3 years ago?

Had a dad
he was big and strong
I turned around and found my daddy gone
he was the one who made me what I am today
It's up to me now, my daddy has gone away...

Saturday, November 24, 2007

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.

Thursday, November 22, 2007

156 not such a haven after all

I've not said it before, but the place my dad is at is called Haven Healthcare, and it's in Rocky Hill. My dad is very fond of the aide who takes care of him during the week, and overall we have no complaints about the place.
But he may not be there much longer, and not because he's dying this time.
A major scandal involving the owner of Haven has hit in the last few days. Evidently, money from the various nursing homes was siphoned out to start a country music recording studio, and bills at the nursing homes are going unpaid because the money isn't there. There is a possibility that government money, such as the Medicaid A funds my dad's contributing, may have been used to start this recording studio.
The nursing homes are now in bankruptcy, as of Tuesday, and the state may take them over.
This is a local article, from the Hartford Courant. The link actually leads to a full page of other links, video, pictures and more about the scandal.
Haven Healthcare, under scrutiny after a Courant investigation exposed patient-care deficiencies in many of the chain's 15 Connecticut nursing homes and that the chain was millions in debt for unpaid bills, has filed for Chapter 11 bankruptcy. State Attorney General Richard Blumenthal announced today that the state would file a motion to appoint an independent trustee to take control over the chain's nursing home operations throughout the state. Haven's bankruptcy filing reveals that the company's 50 largest creditors are owed nearly $31 million...(C)ompany CEO Raymond Termini used corporate assets to launch a Nashville record company and food business and to buy a lakefront home in Middlefield. .... Blumenthal accused the company of severe mismanagement and jeopardizing the health, safety and welfare of the nearly 2,000 patients it serves in Connecticut.... Ray Termini, chief executive officer of Haven Healthcare and Category 5, has blamed much of the company's problems on low Medicaid reimbursement rates for health care services.
But he had enough money to buy a new house and a recording studio from those same funds.
Go figure.

Another article states:
Haven Healthcare, which owns 15 nursing homes in Connecticut and 10 in other New England states, has been fined more than 45 times in the last three years for serious patient-care deficiencies — at least 30 times by the state health department and 15 by the federal Centers for Medicare & Medicaid Services, which imposes penalties for gross violations. Many of the health violations, such as allowing residents to develop bedsores and become dehydrated, show up year after year in inspection reports, even after state and federal health officials have levied fines for those deficiencies. But the chain — one of the three largest in the state — has escaped more serious sanctions, such as a loss of government funding or operating restrictions, even in cases where the lapses in care led to patients' deaths. Haven Healthcare's troubled record affords a window into a state and federal regulatory system that is reluctant to pull funding or licenses from nursing homes or to prosecute cases of neglect. A study earlier this year by congressional investigators found that federal overseers imposed only minimal penalties on nursing homes that were repeatedly cited for patient-care deficiencies. Although the other large chains also have been cited for serious violations, Haven Healthcare stands out because it has faced the heaviest state fines, litigation and debt claims in the last three years, and runs a home with the highest number of patient-care violations, according to records.... Records show the chain has collected millions in Medicare reimbursements for pharmaceutical supplies, but has not used that money to pay its pharmacy bills. Meanwhile, company CEO Raymond Termini used assets of Haven Eldercare, the chain's corporate parent, to buy a lakefront house in Middlefield in 2003 and to launch a record company in Nashville in late 2005. His Category 5 Records, housed in a $2.1 million building Termini purchased last December, boasts two-time Grammy winner Travis Tritt....
(there is a lot of information on the other Havens in Connecticut...which I've skipped here)
Also last October, Haven's Rocky Hill home was cited for failing to notify a physician of a resident's abnormal blood sugar level. The resident was found unresponsive and having seizures. The home paid a $280 state fine. In November, the Rocky Hill home was cited for failing to monitor the fluid intake of three residents who became dehydrated. The state fine: $755.
Now, my father has been on an IV drip there even when we felt he didn't need it. He does have bedsores (being treated), and he did fall while there.

I know Patty Doherty of the Unforgettable Fund is going to be all over this story. Have at 'em, Patty! She had asked me a few days ago to comment on this story, in USA Today, which she contributed to, about Alzheimer's patients who form bonds of affection with people other than their spouses in nursing homes. My dad loves his aide, and seems to recognize her more than he does my mom. Well, he sees the aide every day for hours, and my mom every few days for an hour, during which he is often asleep. Who is more familiar to him now? The aide. I haven't got much else to say about it, and the Haven scandal is more immediate and threatening right now.
My mother is worried enough to start calling our lawyer and checking into other open applications at other care facilities. We don't know what's going to happen at this place, and with an Alzheimer's patient, uncertainty in the surroundings is not a good thing.

If you are interested: Nursing Home comparison chart.
Link to the actual page about Haven of Rocky Hill.

Happy Thanksgiving to all those who are walking this path with us. I was sad that my dad wasn't with us today. The table felt smaller and less happy without his blue-eyed gaze.

Thursday, November 15, 2007

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.

Tuesday, November 13, 2007

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.

Friday, November 09, 2007

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?

Wednesday, November 07, 2007

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.

Tuesday, November 06, 2007

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.

Monday, November 05, 2007

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?

Thursday, November 01, 2007

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.

Tuesday, October 30, 2007

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.

Monday, October 29, 2007

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.

Monday, October 22, 2007

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.

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.

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,


Sunday, October 14, 2007

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.

Thursday, October 11, 2007

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.

140 seizure

My dad had a seizure this morning. He didn't eat his breakfast. His aide, the one he likes, went back in to try to feed him and found him on the floor in an active seizure. He hit his head and was bleeding badly. They bundled him to the same hospital that almost killed him last month.
My mom has to pay the full daily price PLUS $25 to hold the bed while he's in the hospital or he'll lose his spot in the (full) nursing home. She's paying. We like the place and they like him.
That's all I know right now.
Last year my mom's friend's husband started having seizures right before he died. He was way worse off than my dad though.

Tuesday, October 09, 2007

139 the age of "never"

In one of my favorite books, Aztec, the main character says he's come to the age of "never", when you find yourself saying things like "these stairs never seemed so steep" "my driveway never seemed so long" "I never seemed to get tired so easily".
My dad has come to another age of never. For instance, he's probably never going to see his beloved cat again. He's never going to see my grandmother again, or have dinner at her house. He'll never come over my house again, or see my birds and say "Which one is the original?" He'll never "help" me by coming to the bird or cat vet with me again. He'll never eat at a restaurant in Wallingford with my mom and me again. Never again, never again, never again. It's very like dying, isn't it, to go into a nursing home? So many other options just cease to exist.
It is doubtful he'll ever walk, or use the bathroom on his own. His speech is so degraded; it's all slurs and intonation, not words. That might not come back, not after all the anti-psychotic drugs the hospital pumped into him for 2 weeks. He doesn't really recognize my mother or me anymore--not as familiar faces. We often can't wake him when we do visit. His only expression is vacant--in the truest sense of the word, because no one's home in there, not anymore.
So honestly I'm not sure how much I can write in this little blog of mine anymore. Went to see dad, he didn't wake up. Went to see dad, he didn't know who I was. You know?
Supposedly, in the UK, their socialized medicine program doesn't pay for Alzheimer's drugs once the AD patient is in a nursing home. When I first heard that I was upset. But now I understand. All the drugs do is slow down the disease. If you're at the point where you're in a home, why would you want to live any longer than you need to? Get it over with, right? Now I understand.
This disease is fractal with layers of meaning and pain and suffering--just when you think you've gotten to the worst it can be, along comes something else to wallop you.
My mom had a meeting today at the nursing home. They are doing "occupational therapy" and physical therapy to try to get dad walking again. He is still in acute kidney failure, which my mom insists is from all the days without proper food and water in the hospital, but they say it's not. That's going to kill him, I suppose. We can't put him on dialysis. And here I am so dispassionate about it, but how else can I be? If I scream and cry and pull out my hair and rend my clothing, will that somehow make anything better?
My grandmother had a meltdown this morning; called me at 8:30 freaking out that she was dying, she was dizzy, she couldn't read (I know--huh?) and she couldn't find my mother. I knew my mom was probably walking the dog (and she was) and I got to her house just as she was telling my grandmother over the phone that she had a meeting at the nursing home and that I had to work and no one was going to come over until much later. So grandma called 911 and is now sitting in the familiar halls of the hospital ER, being ignored because she's fine. She did not have a heart attack as she claimed and she wasn't dying. So now my mom is done with my dad's thing and has to go take care of her.