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: REMEMBER 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. :(
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.
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. www.wallingfordfh.com
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.
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...
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.
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.
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.
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.
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?
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.
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.
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.
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?
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.
My father's 1253-day journey through Alzheimer's Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well. All material is copyrighted by Gevera Bert Piedmont (except where noted and where quoted from other sources); please do not repost without permission.
"The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about."
"It's a long, slow slide into oblivion, with no brakes."
"If this was a paper journal, the ink would be running with tears."
"Imagine 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, who loved his family and his pets and his raspberry bushes, and turned him into a fearful person with a vague and confused stare."
"It's a nasty disease, surrounded by shadows and small, largely unseen tragedies."--Terry Pratchett
This is a reminder that Alzheimer's disease affects real people, real families. My dad wasn't a monster, just a man whose brain was slowly eaten by a terrible disease.