147 this may be it, revisited

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

146 "I'm shocked"

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

145 Portrait of Stage 7

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

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

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

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

144 what's going on part 2: "don't count him out"

I am so angry. Angry beyond words. The ER doctor totally lied to my mother and me. She looked us right in the eye, as we stood there in a cubicle literally sprayed with my father's blood, and told us he was going to die.
I went home and emailed friends and family members an impassioned plea for healing energy. I posted here on this blog this was it.
And people responded overwhelmingly with notes and prayers and drumming circles and cyber hugs. Friends cried with me on the phone.
To save my mother the burden, I went to the funeral home and planned my father's funeral. It wasn't as awful as I had dreaded it being, but it was bad enough. (Worse yet, when I left the funeral home some idiot had put fliers on every car in the lot--you know, those people there for the two wakes in progress--advertising a new restaurant. Yeah, because when people leave a wake, the first thing they do is think, "Man, I could go for some Thai food.") I didn't put down any money, just picked everything out and got an estimate on the big stuff.
And all of it was totally unnecessary. That lying doctor caused us so much more grief than she needed to. And that's why I am angry. I'm not angry that my dad lived. I'm angry that a medical professional gave us a bunch of totally bad information, that led to me giving out that same bad information to a large number of people, that led to a lot of extra grief and work for me and my mom. (And my mom said she --the doctor--put the stitches in my dad's head while he was conscious without anesthesia--that's why he was screaming so much when they made us leave the cubicle.)
After my mom went to see my dad on Friday, she called me and said "Don't count him out". I thought she was in denial. I went to see him and he looked awful. His mouth was still full of dried blood. Blood was all over his pillow, as his head wound was still bleeding. He never opened his eyes the whole time I was there. He just held his hands in front of him like a blind man, always searching. It was horrible to see, and I couldn't stay and look at him like that. His hair, which was brown a couple of weeks ago, has gone iron-gray. (Look at the photo I posted on September 26--his hair is still brown.)
On Saturday I went to see him again. I was shocked when, as I entered the room, he opened up his eyes, looked right at me and said "hi" and reached out his hand. Everything he said after that was gibberish--not a syllable could be understood--but at least he was trying to talk. One of his previous aides was taking care of him again. She had cleaned up most of the dried blood from his head and mouth and was giving him a blue oral rinse (even so, his breath could have flattened a house). I tried to feed him (all pureed foods) without much success. Who knew my "mom" experiences would be with my dad? Feeding, helping to change diapers, bathing. Irony.
On Friday my husband and I had asked to see a doctor and were told they were all at lunch. We saw them come back from lunch but no one came in.
On Saturday, again, no doctors around. I requested to talk to one and waited, but no one came in. Most of the time he was in the fugue state, eyes closed, hands groping.
So yesterday (Sunday), I went to see my dad again and try to feed him his lunch. He recognized Rachel Ray (however you spell her name) on TV and waved to her. He waved to me (a baby wave, slapping the fingers to the palm). He did not like his lunch and kept spitting it out so I finally gave up and was just sitting with him. He kept trying to explain something to me, his eyes all earnest, big sweeping hand gestures as he ranted in a language even his loving daughter couldn't follow. Then he'd look at me expectantly and I couldn't even guess what he wanted in response. I felt horrible.
A priest came in. I'm not Catholic anymore, not even Christian anymore. But that doesn't make me be mean to priests. He just didn't get it. He kept asking my father if he wanted communion. I explained that he has Alzheimer's and brain damage and can't speak. "Can he take the host?" I shrugged and explained that while my father is nominally Catholic, he hasn't been to church once in my entire life, much less gone to confession. The priest looked a little surprised at that. "Can he swallow?" I sighed and said, "If you want to give him communion, go ahead. But he just spit his dinner at me and if you give him the host he'd probably spit it out." Instead of having sympathy for my father's condition, offering to pray for him or with him or anything compassionate, the priest left in a huff, muttering about "spitting out the host." I could hear him out in the hall talking to himself about it. As if someone not in his right mind should understand the significance of a piece of cardboard and know not to spit it out! And you wonder why I'm not a Christian anymore?
And then, thank the gods I believe in and even those I don't, an actual doctor came in to talk to me. A neurologist. (Although the death-talking ER doctor had told us they were NOT calling in a neurologist as my father's bleed was inoperable--another big fat lie.) He was very nice. He told me about the 2 bleeds, said his right side might be affected for a while as the worse one was on the left. He wanted to know what my father had been doing; I told him that Dad had tried to take the cup of juice from me and drink for himself but he couldn't find his mouth; same thing with his spoon. The doctor said that will probably come back. He asked about my father's "baseline" with speech versus the mumblin000g. (I've only heard my dad say 3 clear words since the fall: hi, yeah, and no.) He believes much of his speech may return as well, at least to the level of last week.
So that's it. I feel like the girl who cried wolf, who went around in a great state of drama: my father is dying! Woe unto me! and it was all for nothing. I feel stupid. And angry. I don't like to feel stupid or dramatic. Why do I feel stupid? Because I am a good girl and I believe in authority. I believe when a doctor is smeared with my father's blood, when my father just had a convulsion right in front of me, and that doctor says "he's going to die" that the doctor is telling me the truth.

143 thank you

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

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

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

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

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

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

Thanks again,

Bert

142 what's going on

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

141 this may be it

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

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.

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.

138 diagnosis

I was helping my mom fill out some paperwork for my dad. On it they had his "diagnosis" upon being admitting to the nursing home, full of words I don't know (but I will learn): kidney failure, rhabdomyolysis, hypokalemia, hypomagnesmia.
Kidney failure I know. But no one ever said "Bob's kidneys are failing." Isn't that kind of, well, IMPORTANT?
WebMD says: Acute renal failure means that your kidneys have suddenly stopped working. Normally, the kidneys filter wastes and help balance water, salt, and mineral (electrolyte) levels in the blood. When your kidneys stop working, waste products, fluids, and electrolytes build up in your body. This can cause life-threatening problems.....Acute renal failure has three main causes:A sudden serious drop in blood flow to the kidneys....(doesn't seem applicable to my dad)....Damage to the kidneys. Certain medicines, poisons, or infection can damage the kidneys(, including) antibiotics.....(and) common pain medicines ....such as aspirin and ibuprofen (he does take aspirin for his heart. Not sure if they gave him any pain meds.) and lastly, A sudden blockage that prevents urine from flowing out of the kidneys. Kidney stones, a tumor, an injury, or an enlarged prostate gland can cause a blockage. (My dad hasn't had kidney stones in years, but he does have an enlarged prostate.)
So is it being treated or what? Could it be a result of 4 days without proper food or water? Will it get better? Is anyone going to tell me any of this?
Now onto the next one, from an online medical encyclopedia:
Rhabdomyolysis is the breakdown of muscle fibers resulting in the release of muscle fiber contents (myoglobin) into the bloodstream. Some of these are harmful to the kidney and frequently result in kidney damage....The disorder may be caused by any condition that results in damage to skeletal muscle, especially trauma. (Oh, you mean, like being left alone and falling?)
(From health a to z): Hypokalemia is a condition of below normal levels of potassium in the blood serum. Potassium, a necessary electrolyte, facilitates nerve impulse conduction and the contraction of skeletal and smooth muscles, including the heart. It also facilitates cell membrane function and proper enzyme activity. Levels must be kept in a proper (homeostatic) balance for the maintenance of health.....Hypokalemia is most commonly caused by the use of diuretics. Diuretics are drugs that increase the excretion of water and salts in the urine. Diuretics are used to treat a number of medical conditions, including .... kidney disease. (So, treating the kidney disease caused this one? Nice.) Mild hypokalemia usually results in no symptoms, while moderate hypokalemia results in confusion, disorientation, weakness, and discomfort of muscles. (Which would look exactly like a person with AD who fell recently.)
Other sites spell the last disease a little differently than his chart, but I'm guessing it's the same thing. Hypomagnesemia seems to be simply a lack of magnesium in the blood. (which I probably could have figured out from the name). I had to go to Wikipedia as I couldn't understand the heavy science content of the other articles on this.
Again, it seems to be caused by the treatment for the kidney failure.
The home is supposed to take him to a medical doctor tomorrow. Hopefully all of this will be addressed.

award for this blog :)

My blog was just listed in the "totally fabulous caregivers" post on D's Health and Weight Loss Journey blog. Thanks, D!