133 stalled

Yesterday afternoon my dad was supposed to be transferred to Masonic for a 15 day evaluation of some sort before either being placed in their Alzheimer's ward (if a bed became available) or in another facility.
It didn't happen.
Masonic backed out and refused to take him because we don't have a "plan" of what we're going to do with him after the 15 days are up. We have to have a facility that will take him lined up already before we can get him into Masonic.
The catch-22 is that

• No one wants to take him without an evaluation. (And it seems clear that the hospital he is at is not capable of doing so, despite what we were told.)
• No one wants to take him because he's so violent.
• No one wants to take him because he'll be on Title 19. And of course all these places have waiting lists a mile long. My dad doesn't have a mile to wait.

So my dad is still in restraints, drugged out of his mind, in the emergency room where he's been since Saturday. They haven't been giving him his heart or AD medicine or feeding him.
I don't even know where to start to go to someone for help.

132 involuntary committal

My mom went to a support group meeting on Thursday and talked a lot about my dad's violence. They were all appalled. They told her next time he does it, to call 911 and have the police come and have it documented. Then the police will take him to the hospital for evaluation and from there place him into an Alzheimer's care facility.
Sounds good on paper, right?
Saturday morning (yesterday) he flipped out while my mom was trying to get him to shower. He scratched her face and bruised up her arms. She called 911 and me. I was on my way to one of my favorite restaurants, about 20 miles away, for an early lunch while my husband's car had new tires put on. I told her not to let them take my father until I got there. We got off the highway and got back on going South and came back to town. When we got there, 3 or 4 cops and a couple of paramedics were taking my dad out. He didn't see me. I followed them to the ambulance but they wouldn't let me talk to him.
I had had a headache since the night before (not enough food on Friday). I was adamant about not going to the hospital without eating. My friend's husband is an EMT and they heard the call over the scanner and called me to see if everything was okay and did I need help or anything. I couldn't think of anything they could do so I said no. Her sister in law works in the emergency room where they were taking my dad so she said she'd call her and make sure my dad got good care. Will, my mom and I stopped for hot dogs. My friend called back to say her SIL wasn't working that day, but that my dad had just arrived at the ER. She said the procedure was that he'd be evaluated and sent to the hospital's Alzheimer's ward. From there, maybe a nursing home with an AD unit, or something similar. Okay, sounds doable.
The reality was far different.
My dad was in one of the little curtained off cubicles in the ER. A horrid woman who we thought was a social worker but who was the head nurse came out and asked some questions. She seemed very snotty and not at all sympathetic or supportive of the choices we had made with my dad's care so far. She questioned why we never got a nurse or aide to come in and help and seemed very supercilious. She didn't seem to understand the disease at all. She complained that my father wouldn't answer questions. "He can't," we said over and over, exasperated. "He's got Alzheimer's." "He doesn't remember what happened," the nurse said. Again, we said, "He's got Alzheimer's."
As soon as she left, my mother said, "if it's up to her, she'll send him right home and nothing will change."
Then a very nice doctor, Dr Curran, came in. He had a slight Irish or Scottish accent, a very kind-looking man. He asked real questions, he listened to the answers, and said that he was relieved. After reading the police and ambulance notes, he worried that he would have to convince us to place my dad in an Alzheimer's facility. He said most of the cases coming in fall into two categories: trying to dump an AD patient they don't want to deal with (but who doesn't really need to be placed) or one that needs to be placed but the family refuses. Very rarely does he get a family who has genuinely tried and understands that this is the end of the line. I really hope he is not the doctor my father tried to kill, but that's getting ahead of the story.
No sooner does the doctor leave when my dad gets moved into the hallway so an accident victim can have his cubicle. In the hallway we stayed, in everyone's way, for hours, ignored for the most part.
So much happened that I'm not sure of the order anymore. All this happened, but I have no idea of the sequence. I was out of it from head pain, grief and hunger.
A nurse or aide or tech of some kind came to take blood. She tried to explain to my dad and get him to cooperate. He wouldn't. She tried talking louder. (Did she think he was merely deaf? Do these hospital workers not understand AD?) He hit her and she walked away without even taking the tube off his arm.
At some point, there in the hallway, my father realized that he was being put into a home permanently and he was never going home. He started to cry. He has never cried, not once, not even when diagnosed. It was awful. I ran to the nursing station and told them my father was having a melt-down and were going to need help. He started screaming "I won't I won't I won't" and begging my mother, "I won't get to see you again?" until we were all in tears. He was yelling for us to kill him, that he'd kill himself. He tried to get out of the gurney and leave. Finally one guy came, a middle-eastern guy. He said his father has Alzheimer's. He managed to get my dad back into the gurney and put up the rails and a foot board to keep him in. Remember this is all in the hallway, with not even one of those curtained privacy panels.
I had to go the bathroom and when I came out, my dad and husband were gone. He had gone to get an x-ray because he told us his upper left arm and chest hurt and they were worried he had another heart attack. They only managed to get one of the two x-rays they needed because my dad would not cooperate. Will tried to help but he fought my husband too and called him a "beasterd" which I guess is a beastly bastard. That part was pretty funny.
The same middle-eastern guy came back and got blood from my dad with no problem. I told him not to explain, just do it, and that seemed to work.
When my dad was lucid, he was looking at the bruises on my mom's arms and the scratches on her face. "I didn't do that," he said over and over mournfully, touching them. "I didn't do that." "A bad man did that," Will said. "Not you." And he wasn't lying. The man touching my mom's bruises is not the same man who created them, even if he lives in the same body. "Get that bastard," my father said to Will. "Kill him." "I will," he promised. "I'll get him." My father keeps looking at the bruises, muttering "bastard. kill them."
By the time it was 3 p.m. we were all hungry again (eaten hotdogs at 11:30, dad hadn't eaten at all). I went in search of whoever I needed to ask if my dad could eat. That's when I discovered the mean woman we talked to first was his nurse. She had to find Dr Curran. Eventually she said he could eat. There is a Dunkin Donuts in the hospital (talk about health food) and my husband and I went there. I got my dad an egg, cheese and bacon sandwich (the closest they have to food) and a bottle of Pepsi. I got a random chocolate donut and some water.
My dad was in an okay mood at that point. He tried to give his sandwich away to all of us. We explained it was his. He pointed to my donut. "Those are good too," he hinted. I broke off a big piece and gave it to him. He ate the sandwich, the donut and half his soda. Pepsi changed their label and he spent a long time studying it, trying to read it, and showing us the features of the new logo.
At some point, the nasty nurse wandered by. "When is my dad getting a room?" I asked. "We have no rooms, he has to stay in the hallway for duration of his stay." "That's 48 hours, that's not acceptable!" I replied. "We have no beds," she said and left.
By now, we just wanted to take my dad home. If he killed my mom, so be it. She didn't care anymore. No one in the ER cared that we were there. No one was looking after us. My mom took my dad to the bathroom and I found the nice middle-eastern guy. He came back around 4 p.m. to say they were moving someone else out of a room in order to put my dad in.
By that time my head was killing me, and I don't use that term lightly. I was dizzy and could hardly see. My mom stayed to see my dad settled in and I stopped for a pizza, ate a couple of slices, took a shower, called a couple of friends to fill them in and basically passed out in bed by 5:30.
We'd picked up our second kitten on Friday (my dad came and was delighted to see and play with all the kittens) and the little one's constant crying to get on the bed, the bigger kitten chasing her, etc, kept waking me up. At around midnight I found a blue-gel eye mask and stuck it in the freezer. I'd been taking 2 advil liquid caps at a time with no effect. I started drinking nyquil, which usually works, but I couldn't stay asleep for long. Either the cats or the husband or the tv or the AC would wake me up. Around 4 a.m. I retrieved the frozen eye mask, wrapped it in paper towels and went to sleep with it on my head.
My mom called at 9:30 to wake me to go to the hospital. She was taking my father home, she announced. They were abusing him. Turns out her neighbor works in the ER and came over to tell her my dad fell and hit his head. My dad doesn't fall.
It took us a little while to find him. They had moved him from one crappy, tiny room (without even a tv) to another. He was heavily drugged and tied to the bed, thrashing and incoherent. Turns out he tried to strangle a doctor with the doctor's stethoscope, then proceeded to take out two security guards. This was after he had fallen. He fell because the aide assigned to watch him couldn't control him, was scared of him and when he got out of bed and wouldn't listen to her, she ran away rather than stay and help him. Not cool. Although how he fell is still not clear--because like I already said, my dad doesn't fall. He doesn't have balance problems.
The new aide had been there when he strangled the doctor. She seemed impressed. He just grabbed the guy's stethoscope and started pulling, she explained. She said she had never heard a doctor scream like that before, and when he was freed, the doctor ran away. He then attacked the two security guards but somehow they managed to get him into the bed and into restraints. (I think a big fat needle full of horse tranquilizers was involved.)
I stayed there with my mom for about 3 hours. He never gained any coherency. He was screaming, half awake, about "I have no fucking dollars" and the "buckles" on him (the straps). I tried to give him water but he wouldn't drink it. They did not give him any of his medicine Saturday night or Sunday morning. They wanted a "drug screen" from his pee. He wasn't peeing due to severe dehydration (all he had to eat or drink was the soda and sandwich I'd given him.) The aide said she had managed to get him to eat a little toast and a glass of OJ at breakfast and they'd given him 3 bags of saline to rehydrate him. We explained that one of his medicines is to keep him calm and he needed that one but they wouldn't let us give it too him even though we had all the pills with us. Finally the aide took off the condom catheter and gave him a johnny bottle and he peed right away. But they never said what they found in the drug screen. They also asked about all the wounds on his arms and legs, where he picks at himself. I think they think we hurt him. We did not talk to Dr Curran at all (he was there; I saw him from a distance). The nurse was nicer and eventually agreed to unbuckle one arm and one leg, but then he was trying to pull out his IV.
The psychologist was an idiot. He would come by, we'd try to wake my father up and he'd leave before we got him awake. He said he needed my father to speak. We said he was too drugged to speak. He asked my mom all sorts of questions as if my dad was a psychotic and not like has a brain illness. He would come by every 2 hours and stay for less than 2 minutes. No patience.
I stayed until around 2 p.m. It was evident my dad wasn't going to wake up and we weren't taking him home. The aide, who was very sweet, said that we would get 90 or 100 days of free care from Medicare based on this weekend's events and he'd probably get sent to the Alzheimer's unit at Masonic, which is very near my house. That would be okay if that is the truth. If he did get sent home, she said we'd be able to get Medicare and/or the AARP insurance to pay for a home health aide after this.
Well that is all I know for now; when more happens I will update. Probably tomorrow.

131 "he's not your father anymore"

I look back through this blog and smile sadly at some of my posts, where my dad did things that were kind of goofy and funny and we laughed a little at him, but in a loving way.
My dad is not funny anymore, not in the least.
He is incontinent, combative, possessive and completely inarticulate. And that's on a good day.
If he's not watched constantly, he goes in his pants. But now there's a twist. He won't take the dirty pants and underpants off. He won't shower. He sleeps fully dressed, in pee-soaked clothes. My mom is at her wits' end. Even if she could get him to wear diapers, how would she change him if she can't even get him to take off underwear soaked with pee or worse?
Sunday we had just gotten home from hiking at Sleeping Giant when my mom called for us to come over immediately. They were out in the yard and my dad attacked my mother, screaming at her that she'd stolen his money. (What money? Who knows?) Their neighbor saw or heard or somehow realized what was going on and rushed into their yard to pull my father away. In the melee the dog bit the neighbor (not badly), probably protecting my father.
We got there to find the kindly helpful neighbor with a slightly bloody leg, my father with his "mean face" on and fists clenched, ready to rumble and my mom in tears.
Typical Sunday.
My father turns to look at us as we walk up the sidewalk and demands to know, "Why are they here?" I finally do what I said I wouldn't do. I say, "I'm your daughter. Don't you know who I am?" Blank stare. My husband starts trying to talk to him and calm him down, but the mean face is getting worse and the fists come up. Remembering what several people have said to me about giving him things to hold, I take both his hands in mine and try to smooth out his fists. He yanks his hands back and fists them again like he' s going to go for me. I almost wish he would. My husband steps in, grabs my father, and starts saying emphatically that we're there because we love him and we want to help him but he can't hit people. Of course we have said this to him so many times and he won't learn. As Will is talking, my father is looking around him making the mean face at me and my mom is apologizing a million times to the neighbor for the dog. In return the neighbor apologizes for not realizing what was going on sooner and getting there quicker. Nothing is being accomplished.
The neighbor leaves. I sit on the steps. Will is still giving every version of his "do you want to live here with the cat and dog? Then stop hitting your wife" speech to my dad who is not listening. My mom explains that my father thought she stole his money. I give my father $3. He makes the mean face at everyone and then squirrels it away in his wallet.
The sad fact is that Sunday was my parents' 40th wedding anniversary. We should have gone out to a nice restaurant and celebrated. But there is no way.
My dad has my mom's engagement picture next to his bed. She saw him looking at it and asked who it was. He said, "my wife." And then he admitted knowing the picture was of her. So he knows that she's his wife. But he acts like she's his jailer.
I told my mom to leave, go anywhere, shopping, walk in the park, Sunday drive, just to get away. She went out shopping for about 90 minutes, leaving us to sit with my dad while he watched a ball game and pretended we weren't there.
In grandma news, we brought our new kitten Sputz over her house a few weeks ago to visit. She thought he was "very wild" but he was actually well-behaved. He ended up laying on the table sleeping while we did the puzzle. (At our house, the cats sleep on the kitchen table all the time--they have a bed there by the window--we never eat at our table.) Since all Grandma did was complain about the kitten, I won't bring him anymore. I thought that was the end of the story.
A few days later, something happened with my parents' cat. My dad let him outside without his leash and when my mom went to retrieve the cat, for whatever reason he freaked out and bit her hand pretty badly. It was swollen and infected. She took some antibiotics and it got better. End of story with that, too, right?
No. Grandma saw Mom's hand before it was healed and got it in her head that my fuzzy cuddly Sputz bit her, not crazy Jasper, and said she didn't want Sputz coming over again (which he already wasn't) since he'd bitten my mom so bad! My mom couldn't get her to understand that Sputz is a very good kitten and he did not bite her.
Back to dad.
So Sunday we have dinner as usual with grandma. My father leaned over and either karate chopped my mom's arm or pinched it (he does both, I didn't quite see which this time) and once again my husband explained IT IS NOT ACCEPTABLE TO HIT OR HURT PEOPLE.
Blank stare.
We get ready to leave. My mom collects most of the empty soda cans in a bag. My dad's can is empty. She tries to take it. He resists. She gives up for the moment. We all go outside. My husband and I get in our car and start to back out of the spot. My mom tries again to get the empty can and my dad whacks her. My husband stopped the car dead, rolled down the window and yelled at him, getting the mean face in return.
In the car on the way home, I said, "I hate being mean to my father." My husband replied, "he's not your father anymore."
His rages always about "his" things. You are trying to take something from him (his soda can, his filthy pee-stained underwear) and that makes you the enemy in his mind. Or he thinks you have taken something that either he never had or he just can't find or is confused about.
And it's not just my dad. This was in News of the Weird a few weeks ago. It's mainly meant to be a humorous column, but this section didn't strike me as funny:

At a Toronto nursing home in May, a 69-year-old resident angrily kicked a 79-year-old fellow resident, causing him to fall and fatally hit his head. The victim had taken up with a female resident, thinking she was his wife, but the jealous younger man thought the woman was his own wife. She was actually married to neither; all three had Alzheimer's disease. (No charges were filed.) [The Star (Toronto), 6-21-07]

"That's my wife." "No, that's my wife." Kick. Thump.
In other news, I somehow came across this on the web: Project Lifesaver. I am probably going to explain it badly, but it is a GPS project aimed at dementia/Alzheimers, autism and Down's Syndrome people. They get a wristband which looks like a watch that has a GPS beacon in it. If the person goes missing, they check that person's GPS beacon frequency, dial it into some special machines and go looking. They sent me a nice DVD for free with some written material and asked me to give it to the local police, which I did. Whether they will sign up for it, I don't know. No police station in Connecticut has yet, although the Project Lifesaver guy who sent it to me said Stamford might. They can network the GPS info with the Safe Return data.
If you haven't got this in your area, write to them, get the info package and bring it to your police station. The Wallingford police had never heard of it, although they knew about Safe Return. I also found that my dad is not flagged as a dementia patient in their computer so I had them do that. I'm not sure why, since they have his safe return info.

130 "Get in the shower"

Monday my mom called, frantic, saying "get over here and deal with your father."
He couldn't find the bathroom, couldn't ask for it, and pooped himself. Fine, no reason to make a big deal, right? But he refused to remove his soiled clothes or take a shower. My poor husband was in the bathroom with this smelly wreck of a man for a good half hour. He started off asking nicely and then progressed to threats (I will cut your clothes off with scissors) and yelling (take off your clothes! Get in the shower!). I just sat there in the living room like a useless lump, knowing that going in there would make things worse --remember how he freaked out when he peed himself a few weeks ago and I was there?
I can't say how much it sucks--you've heard it all, and if you're in this situation, you already know.
Here's another perspective: a friend of mine saw my dad recently. She had known him before he was diagnosed, not well, just as a friend's dad. This is what she wrote me when I told her about the above incident:

I can’t even say how I feel about your father. Seeing him that day ... just opened my eyes to what “Alzheimer’s” is/can be. I probably shouldn’t say this but I start to get all teary eyed when I think about him/it. I just can’t even image how that must be for him. In Monday’s case all he sees (lack of “knowing”) are people yelling at him & not understanding why these “people” are there and upset at him.

I just don’t get it/understand/know why things like this happen. What the hell are you/your mom etc supposed to “learn” from this. Isn’t that what they say “You learn something from your life experiences”? ahhhhh………. I’m just going to stop there because I think it’s something you could go on & on about.

My dad is having more and more trouble articulating even the most simple things. I've decided to bring my camera over there tomorrow and take pictures of everything he looks for: pens, pencils, wallet, keys, dog, cat, toilet, etc, and put them in a photo album so he can just point. To be reduced to that....it breaks my heart and more than that, it makes me so damn ANGRY. Anger makes me want to rant, and like my friend said, once you start ranting on it, you can't stop, because nothing makes the outrage go away. There is no panacea for this rage.

---

Last weekend, I took my dad with me to see some ragdoll kittens at a breeder in Cheshire, Willow Pond Ragdolls. Linda was very kind, not upset that I showed up towing my whole family (well, me and my parents) or that my dad was mentally impaired. He was reluctant to hold the kittens ("too small") but held one of the mama cats and enjoyed watching me sit on the couch and play with them--she's got 8, 2 litters of 4 each born about 10 days apart. How do you pick? I fell in love with one of the littler ones, a seal point. He was the size of the palm of my hand and when I held him to my face and said "I'm going to eat you, you're so cute" he rolled over so I could scratch his belly. I will be going there again this weekend, to see which one I'll actually end up buying.
I already bought one, from Bluberri Cottage Cattery in Ledyard, where the breeder is also named Linda. He is the cutest, sweetest, smartest kitten I've ever owned, a seal point mitted with a blaze on his nose. I named him Chocolate Moose, the breeder named him Andy and my husband named him Sputnik Gauntlet. We call him Sputz.
We still have Nutter. He'll be 14 next week. He's got an ear infection, and of course he's still got lung cancer. Sputz loves him, jumps on him, licks him, follows him around. Nutter is not amused, although he is happy enough to eat Sputz's premium kitten food and lay on his window shelf. Once Sputz has a friend his own age, I hope he will calm down a little and they won't gang up on my poor old kitty.

129 "do I know you?"

I was over my mom's house yesterday dropping some things off for a project we're doing this weekend. She said my dad woke up at (at 4 a.m.) calling her name--"Ann, Ann, Ann." It's rare that he remembers her name.
Later on they were out in the yard and he walked up to her and put out his hand and said, "Hi, I'm Bob Rizza." (Imagine how many times in his life, as a car salesman for over 40 years, 6 days a week, he said and did that, to make it such an ingrained reflex now.) She replied, "Hi, I'm Ann Rizza, I'm your wife." He thought that was hilarious. He had to go and get a piece of paper to write it down.
But an hour or so later, he went up to her again and said, "Do I know you?" (Politely, not meanly.) She said yes, they had know each other for over 40 years. He was amazed at that too, but not enough to write it down.
I have to wonder what really goes on in his head. If a stranger told me he had known me for 20 years (I'm not old enough to have a 40 year friend), I wouldn't blindly believe it. If some guy told me he was my husband, I wouldn't believe that either. But my dad accepts that. "Okay." and moves on. He knows enough that he doesn't remember things to be trusting, I suppose.
But did he ask me who I was when I got there? No, he just stood up, said, "Hi! Good to see you!" and shook my hand (a typical Bob greeting to anyone who is even remotely familiar to him.)
Aside: Today is the 1 year anniversary of my cat Zen's death. :(