Oh phouka, my heart just breaks for you. I wish there was something I could say. “I’m so sorry” doesn’t seem to go far enough.
My heart breaks for everyone in this thread.
Western medicine is wrong. Death is not always the worst outcome.
Regards,
Shodan
Yeah, the next cheerful idiot who says, “Old age sure beats the alternative!” gets a poke in the beezer.
Can’t remember the exact quote, but one of our advocates said something like: “Alzheimer’s patients are the only ones who die twice.”
Q
I’d say knowing I’m not alone helps, except that just makes me feel horrible on other people’s behalf.
I want a program, people! A schedule! “Your father will be a good man for the first 78 years of his life, and then he will slowly erode away into a snippy asshole who makes shit up to cover for his cognitive deficits. After seven horrible years of this, he will die in a tragic meatloaf “accident”. The DA will decline to prosecute, citing ‘time served’.”
Latest Making Shit Up? The ‘check tire pressure’ warning light on the car doesn’t actually mean we should check the tire pressure. It just come on randomly whenever it likes and doesn’t mean a thing.
Mom and I looked at each other, returned to our lunches, and carried on.
Well, I was going to say that right up to the very end, Mom still knew who I was, even if she didn’t know anything else, and she never became “a different person”–she just became, like, 5% of the person she had been.
But I see you and your father don’t get on as it is, so that is probably not much help. Maybe he *will *become another person, one that gets along with you better?
Dementia is a crap-shoot. There is no predicting what part of the brain will go next.
No, you’re not alone. I’ve gone through a lot with my own father too. No short-term memory, and his longer-term memory is fading. (No, Dad, I didn’t go to high school today; I graduated high school over thirty years ago.) He’s forgotten his own name on occasion. Much confusion about simple things, occasionally escalating into frustrated rage when something isn’t what he remembers.
Dad is in a nursing home now. Things are slightly better, but he continues to wonder when he’s going home. He thinks he’s in a hotel, and has only been there for a few days. Actually, it’s been months. It’s not technically a lockdown facility, but the door staff won’t let residents out unaccompanied. It’s possible that it doesn’t matter in Dad’s case anyway, as he forgets where the elevator is, and the staff on his floor know not to tell him.
Before he went into the home, he was prone to walking down to the nearest main road, flagging a cab, and heading off to appointments he didn’t have with people he never made them with. Thankfully, he always ended up in one of two favourite places (both restaurants where he was known); and the staff there would recognize him and keep him happy with coffee and reassurances that “Bill” or “Steve” or “Sam” (whoever he claimed he had a meeting with that day) would be there soon, while they called us to come and collect him.
No, you are not alone.
As an Alzheimer’s Advocate, I recently discovered that here in Georgia , in many instances, the dementias aren’t taught to students in our secondary schools. They are just not included in the health sciences curriculum, and they need to be. They need to be because many of those children may already be caring for family members who have one of the 6 major types and have no idea what’s going on with Gramps, Gramma or even Mom and Dad. Just that they’re getting “old and senile”.
Add to that the subheadings “cranky”, “crazy”, “wets his/her pants”… you get the idea, right? Right out of Taber’s Medical Dictionary: “Approved medical terminology”. My ass.
It isn’t the kids’ fault, and maybe not even the parents’. Hell, some of them became parents at age 15 or even younger!
So whose fault is it?
Does the word “greed” ring familiar to you? We’re a nation of greedy, conniving assholes and I’m being kind here. Our government, the banks, the private sector and even the chemists.
“The who??? Quasi, you’ve flipped your last lid, dude!”
No, not The Who, the chemists!!! Those guys and ladies who toil until the wee hours working in their laboratories creating better and better ways to make us all feel better and better using 5 gallon buckets with who knows what mixed into them? Even they’re greedy and oddly enough, for a while anyway, do very well.
So because of this greed, there isn’t enough money where it’s needed the most, and funding for research of diseases such as Alzheimer’s gets moved to the “back of the bus”, if it’s allowed to board at all. Not only the scientists are hurting. There are millions of caregivers who spend billions of unpaid hours trying their best to take care of their elderly loved ones while also trying to care of their own family. This is known as “sandwiched care”, and everybody hurts because of it, y’all.
But I digress.
So who’s going to teach these young ladies and men (you may as well call them that, being that they’re missing out on being children) why they’re doing what they’re doing for us senile folk?
I call it “The Heavenly Disclaimer”: You hear it more in the deep South… "Ohhhhl, bless his/her heart! I just love him/her to death, but he/she is just so senile!!!’
See? That way you can say shit like that and not piss God off.
You gotcher heart-blessin, your love 'em to death, and that caring voice. You’re covered dude and ma’am!!!. Just don’t forget to get “saved” before you check out, and you should be fahn…
Oh yeah. Who’s going to teach those young men and ladies, right? I keep forgetting!
We are. “We few. We happy few. We band of brothers (and sisters”: The Alzheimer’s Advocates!
Here’s how it works: We ask for an invitation to come to the schools to speak to the kids about Alzheimer’s Disease. (For now, we’ll use it as an all-encompassing term, and work the rest in as we speak and hope they get it).
Some of us have the “Early Onset” version of dementia and are still able to communicate while others of us have a loved one with one of the dementias and educated themselves, but we are all happy to help and are grateful to the many school systems for allowing us to visit and share a bit ourselves. It would be great to have the support of a textbook from the Health Sciences departments, but for now our chief weapon against this killer disease are our pamphlets and a willingness to help. Amongst our weaponry are such diverse elements as: pamphlets, a willingness to help and an almost fanatical desire for more funding. Cardinal Cecil!!!
(Apologies of course to Monty Python’s Flying Circus from whom I stole the above!:))
Finally, I guess I can sum up my own thoughts about what we’re trying to do for these caregiving kids robbed of their “kidhood” to soon, is a quote by Jess Lair PhD, who wrote a book by the same name: “I ain’t much, baby, but I’m all I’ve got”. Maybe in this instance “all you’ve got” would be a better choice of words. 
Thanks, and sorry for any mistakes in typing and/or grammar.
Quasi
We used to get on quite well. I was the kid who went sailing with him three and four times a week during the summer. We’d talk books and writing, Hollywood musicals and film noire while I was in college. It changed slowly after college, but I always knew he was in my corner.
Now, he resents it when I speak up during conversations, especially if I offer a factual correction. He hates it when I “boss” him around (“Hey Dad, I noticed it was time for your meds, so I brought them to you. Here’s a glass of water.”). I can’t keep my mouth shut when he starts talking about aliens drawing the Nazca lines.
Really, the only time he’s smiled at me and shown me affection in the last several months is when he was in the middle of a “cerebral event” and had to work hard to remember my name. He seemed a little puzzled, but was willing to go along with everything, which is a far cry from his normal attitude.
It sounds terrible, but if he got hit by another clot that reduced him permanently to that level, we would all be better off. I could take care of him without wincing every time he opened his mouth. He could relax and be taken care of. I would dread every time he picked up his car keys . . . pedestrians across the county would be far safer.
sigh Og damn, dementia sucks.
Shakespeare, Henry V, IV, iii.
My Dad taught me that speech years ago. He loved Shakespeare, and passed his love of Shakespeare’s works along to me.
When I used that quote in a conversation with him recently, he had no idea where it came from. He thought I was making it up. 
You can say that again, phouka. With my son and myself, it’s just the opposite. It’s brought as closer together, which is good, because all of hour adult lives, I’ve been on his ass to succeed, succeed, succeed. It got to the point we avoided each other chance we got.
Everyone was walking on eggshells around me…
Now I want to make up that time but I know we never can.
Q
I just love the ? in the parentheses in the thread title. I interpret it as “Ongoing?..maybe. If we remember.”
And, yes, my dad recently died with Alzheimer’s, so I cope by joking about what my mom calls “Ockenschlager’s Disease”.
(she loves it when people correct her, and she can reply with “Oh, yes, that’s it. I can never remember the name of it…”)
Sounds like we both have the same attitude about the disease, and so does your mother. I hope it’s okay to say that.
When I first found out, it was like everyone here (and a few in my “live life” ) already knew something wasn’t right, and didn’t mind telling me. It seemed as if I were going through all 5 stages of grief at once.
But then I kinda “rebounded” and told myself, “you can sit around here every day waiting for it to take what’s left of your brain, or you can tell yourself and those you love, ‘"Okay. Now that we all know, let’s have some fun together while we all still still can.’”
I hope I’m not being presumptive, digs, but I, too encourage my friends here, to have fun with me, and ask, ask, ask. Anything. Anything you all want, because this is probably one of the last things I’ll be able to give folks, and it’s too important to keep to myself if I can help someone else by talking about what’s going on with me - especially if it brings a smile.
I never thought I’d write something like I just did but I don’t want to lock myelf into that “dark room” because it’s too damned hard to come back out, and makes me feel like I may have been lying in one of those sensory deprivation tanks and when I come out, no one’s going to remember who I am, including me.
So, in that way at least, it hasn’t all been a curse.
Thanks
Bill
I really appreciate your contributions to this thread, Quasi. I’m also glad that you’re able to have a sense of humor about things. Sometimes I do and sometimes I don’t.
I’ve just now finished making a sign to put up downstairs for my grandpa. Even though he’s not allowed to drive anymore, he comes upstairs at least twice a week either asking me or telling me that the plates are expired on his vehicles. (They’re not.) I should have made the sign awhile ago so that he wouldn’t have to worry…
I just wish my other family members would pitch in a little bit. It’s 99% me and my mom. Really, the one who could do the most, either financially or by coming out to visit would be my younger brother, but not only has he shown no interest, he’s been incredibly emotionally remote.
Seriously, your sister says, “Dad’s been losing a lot this past year. It’s getting really difficult.” How do you respond? Say, “I’m sorry”? How about “I noticed. I know”? Maybe even a “he’s lucky you’re here”?
But to sit there and say nothing at all?
Yeah, bro. Go back to your book or the game on your phone. Be condescending when I ask for help with a project. Avoid spending any time at all with anyone, except for the one afternoon when you, me, and our older brother went out for lunch and a movie. Ignore every clue of emotional stress from me and Mom that you see. Pretend everything’s fine.
When you leave for the airport, make sure you act like getting a hug from is me is like being coughed on by a plague victim.
See you next year.
So, the administration people at the place where my dad is have started a Family Council where we get to suggest problem areas that need fixing, etc. Before the door had even closed on them, the rest of us looked at each other and said, “staffing levels.” We, all of us, think that there are too few staff to look after all the residents. I am particularly concerned since my father is a behavior problem. And we had another incident last week where he was found in a room with one of the female residents (If she could give consent it would be a different thing.) And, on a different note, I found him with his night bag (he has a foley catheter and the tube to the bag is long and a tripping hazard besides being nasty to look at and undignified) still attached, instead of his day bag (smaller and it stays on his leg under his pants).
So, obviously, not enough attention being given. My question is, does anyone know what the guidelines are for staffing/resident ratios? I cannot find anything except for “consistent with level of service for which facility licensed.”
I’m in Arizona. I know we don’t like to tell anyone what to do or how to run their business, but…? I don’t know how I can demand more staff if the state doesn’t care. Any ideas?
ETA: Admin note: Accidentally made under the “caused two” username; this is actually oboelady. Accidents happen. No harm, no foul.