June 15, 2005

Kicked Out of the Adult Day Care Center

My dad was kicked out of one of the city's adult day care centers today -- one that was opened specifically for him.

My dad was diagnosed with Picks Disease about 6 years ago and he's been attending Elderhaus once a week for the past five years. About six months ago the center decided to open up another branch specifically for people like my dad who are still very active, despite their mental decline. (My dad walks anywhere from 2 to 6 hours a day. He particularly likes to walk through parking lots where he can search for coins.)

My mom has been reluctant to take my dad to the new center because the few times she's gone there, the people seemed somewhat upset that my dad was going to be there for the day. And yet when I would pick my dad up from the old center the director would ask me repeatedly why my mom wasn't making use of the new center more often.

But today when my mom went to take my dad to the new center (which she's been trying to use more ever since i got on her case about it -- mostly because the director was getting on my case about it) she was told that dad had been barred from their program because they can't watch him well enough. (They hadn't even had the decency to call in advance and let mom know that dad couldn't come. She'd already made plans for the day and then found out this morning that they wouldn't take him.)

People ask me how my dad is doing and if there's any change in the situation and usually there's not much to report. But within the last year my dad has become much harder to care for and my mom is
definitely in far more need of support now than when we first moved here four years ago to help her out. I may be moving back to San Francisco in a year (so that Rob will no longer have to commute 2000 miles to get to work) and I was counting on my mom using more of the city's services to help her survive.

Now it looks like that will be out of the question.

This picture of my dad was taken a few days ago. My sister has laminated a card and had pinned it on to him. It says, "My name is Les Kool. I have dementia. I like to look for coins in parking lots. If this is
a problem please call" and then it lists her number, my mom's number and my number. People have called the police on him once before because they were creeped out that this older man was wandering around their apartment parking lot and my mom has overheard people in other locations talking about my dad and how he makes them feel uncomfortable. My dad wouldn't hurt a fly. He's just... weird, thanks to Picks disease. This is a man with a PhD in Economics from Temple University. Thankfully he is completely oblivious to all that has happened to him. If he knew, it would break his heart.


  1. Temple!!!!

    Seriously Meg, I'm sorry for what must be a difficult if not impossible role right now.

    He's a good looking (young) guy btw.

  2. This is the "best" part of mental illnesses like Alzheimer's, the whole you're not aware that you have "lost" your mental faculities in some way. On my wife's maternal grandfather's side of the family, including him all but one sibling has had some for of mental dementia very similar to Alzheimers. So people in the family from that lineage worry about that. My wife said once she was scared about the possibility of facing Alzheimers, to which I said, don't be, you won't even know you have it. Not terribly comforting I know...but none the less the truth.

    Great, thanks for bumming me out meg. :P

  3. hey, any time.

    rob's grandpa died of Alzheimer's as did his twin brother and two other siblings. rob's dad was so afraid of getting it that he pretty much drank himself to death.

    i hope that if i start to get picks, i'll at least realize it well enough to write some last message to my family. something along the lines of, "please remember how i used to be. please treat me kindly even when i drive you nuts and even when i don't know how you're treating me. because i don't want you to remember me as someone you hated. and please know that if i had my way, i would die quickly with the words, "i love you" on my lips."

  4. I've mulled over the idea of writing a "final letter" for awhile. The whole issue of mortality though is a bit heavy, so I haven't quite made it that far (the letter writing). Purchasing life insurance was bad enough.

    You could write your letter now. Make it a novel length, all types of death encompassing bit. (chuckles) Or maybe not. :D

  5. well, in a sense i already have started a letter to my kids. when they were born i bought an art notebook for each. it's bound like a book, not a notebook. i started with a section on "before there was you" then i have thoughts and memories from when they were born on up to today. i don't write in it very often (once or twice a year). but it's not a baby book or picture book (despite the fact that it has some pictures and includes baby book type info. sometimes) so much as a journal from me to them.

    i write about things like how i felt about having twins and what my feelings were at the time. (when the girls were born not only did i feel completely isolated from nathan (who was almost two) because i was so involved with the girls, but i also had a hard time dealing with the girls emotionally. when nathan was born we clicked. he was mine and i was his. when the girls were born i felt no connection. and i didn't know if it was because they were twins and i was just overwhelmed having three kids under the age of two. or if there was just less connection for some other reason.

    the girls have/had very different personalities from nathan. nathan and i "match" in a sense. he's an ISTJ and i'm an INTJ so we're pretty similar in our attitudes towards people and things. and even though he was a baby, somehow this made a difference.

    the girls, on the other hand, are ENFJ's. they cried tons as babies and weren't comforted by me. i didn't think they were cute and struggled about liking one more than the other. (which was silly because there was no reason for it. and yet it was a very real feeling and affected how i treated them. and i felt guilty about it.)

    whew! major tangent. anyway, all that to say that i try to speak adult to adult to them in that journal. and some day when they move out of the house and i feel like they're ready for it, i'll give it to them. in the meantime, i have a clause in my will that mentions them (so that they don't get lost in a box or something).

    i don't have anything like this for rob, though. poor guy. i'm sure i've traumatized him enough that when he's a 101 (he comes from a long lived family) he'll still be stressed about stuff i've said to him. every time he throws his underwear on the floor or leaves his shoes in the middle of the living room, he'll think of me and grimace. ;-)

  6. Wow, Meg! I'm really sorry about your father, I've worked with people like him all my life, they are the best! I hope that things will work out with the daycare center, I also loved reading your "letter" you really write wonderful!

  7. your dad sounds really nice:-) Your kids are lucky to have grandparents, my dad's parents died before I was born, and my mom's parents died before I turned four. I don't remember them at all, but my aunt(in law)'s mom is kind of like a grandmother to me, she's got great-grandkids now (my cousin's kids), but I feel lucky to have someone *like* a grandparent

    I think it's really sweet, keeping the journals for your kids. they'll appreciate it when they have their own kids, they'll be able to think back on their memories with you:-)


  8. I'm really sorry to hear about this and about what your family has been going through. It's such a shame that people are not more understanding.

    Although it may be difficult for you, I applaud you for posting this because you are making people more aware of this disease as well as hopefully making them more understanding toward people with various conditions.

    I read "The Notebook" a few months ago, it was a beautiful, but sad story. I pray that you and your family will find the support you need.

  9. > ... and please know that if i had my way,
    > i would die quickly with the words,
    > "i love you" on my lips.

    Dang, Meg, I sympathize.
    My grandmother wasted away to Alzheimers. She was 96 when she died.
    Who does Elderhaus get their funding from, I wonder?
    Does the director who was getting on your case know of the ban?

    I looked up Picks Disease on the web, and ... nasty.
    Do the doctors ever discuss how much time your dad has left?
    Your mom must cry herself to sleep every night.

    Aloha mai Nai`a.

  10. i saw someone reading that at the pool today (before we were all sent home due to lightning). what's it about? is that the book that was written by the guy with alzheimers?

  11. Er, no.
    The girl has Alzheimers.
    And doesn't realize that the guy who comes in and reads from "a" notebook every day is the guy who really loved her back when she didn't have the disease, even though she went off and married someone else.

    Or so I gather.
    Haven't read the book or seen the movie.
    I think it would hurt too much.

    Aloha mai Nai`a.

  12. Ugh, tell me about it. Especially when facing a milestone birthday in a month (I'll be 40 come 17 July), mortality starts to be a more frequent topic of thought while driving to work. I remember how turning 25 was a big deal, I can only imagine this one.

    I've thought about doing either a video or something for the boys, along with a note to each one. Life insurance (and the requisite quitting smoking in order to qualify and all) was a hard topic to discuss with Christene. Especially thinking about how, if I died, they could easily lose the house or else have a completely disrupted (and not just by the loss of me) life, with the kids being in pre- and post-school care while she worked...

  13. This is a great idea. Only dont forget the "Now" keep telling your loved ones that you love them. Once either they or you are gone it's way too late.

    Meg I'm so sorry to hear about your dad being banned. Hugs to you, it cannot be easy looking after your mum, dad and kids. You must have the strength of an ox.

  14. You smoked?! I didn't see that one coming...wow. I mean with the whole biking thing and health talk and what have you...geesh. Well we all have our vices. :P

  15. Dude, there are laws against revealing plots of stories and movies....Spoiler Laws. (grin)

    Fortunately since you haven't read or seen the movie, some of your details aren't precisely correct. I bought the movie for my wife for Valentine's Day. It was solid movie, solid story. My wife's grandfather exhibits Alzheimer's symptoms, so that added another dimension of emotion to the movie for my wife. But she stuck with it and it wasn't as bad in that area as anticipated. A close friend of mine the read the book and saw the movie later said the movie was pretty on par with the book.

  16. Smoking's how I ended up talking to Christene in the first place. She and I would meet up at various mutual-friend functions, and would be the ones outside smoking together and talking. Yeah, I smoked for 20 years, mostly on though I did have points where I'd quite for months at a time...

  17. Right now I only have one child, but I've wondered how the relationship between a single child and a parent would change if there were more children. People do it all the time though, so I'm sure it's one of those things you have to experience to understand kind of things.

    My mom gave me a book a couple of years ago about random things concerning her life. It was one of those books you can buy in the store that has questions you answer about yourself. Anyway I had bought it for her for Mother's Day, she took a month or so to fill it out and returned it. I haven't read it yet. I think I'll wait until some distant future. But then what if there is something written in the journal that I won't understand and I've waited too long to ask her about? Precisely. This is one of the reasons I hesitate writing a farewell letter of my own, with my luck there will be something in it that would misunderstood by whom ever I left it to. Joy. :P

  18. well, the real difficulty was that they were twins. i think when you just have one kid at a time, the baby gets to be the precious adorable baby while the toddler gets to be the toddler and the older kids get to be the older kids. but when you have two babies at the same time, it's harder (or was for me) to bond with both simultaneously.

    i don't think i really bonded with the girls until they were about 2. i bonded with nathan a few minutes after he was born.

  19. When Ben was born, Caleb went from being the Little Guy to being the Big Guy. But, he seemed to take right to the role. I bonded with Caleb right off the bat, but Christene hadn't (and still hasn't, to a degree). He's very much me, and I think that is a big part of it. Did you have PPD after the girls?

  20. Ha-ha, I only laugh because my wife has this crazy theory that if we have another child we'll have twins. Something about twins skipping generations and on her side of the family there are a high number of twins and it skipped her generation so she thinks it's her turn to have twins.

    So we don't know what's worse, a single child, or a child and twins...hmmm, decisions, decisions...just kidding, we'll be happy with whatever God chooses to bless us with. :D

  21. What's worse is wanting another child and spending two years and a boatload of money on fertility treatments and having nothing to show for it... :-/

  22. i don't know. i was too tired to be much of anything but tired.

    i don't think i was depressed afterwards. i didn't have time to pee or brush my hair or even eat sometimes. so i was definitely stressed. nathan had a really hard time with the transition. and the girls would regularly scream/cry from 3 pm to midnight. they never took naps at the same time and even if they did there was still nathan to deal with. generally the girls napped for 20 minutes at a time. they were very hard babies. nathan had been an easy baby. he spoiled me, perhaps.

    i did have to deal with anger. i would get really frustrated with the kids. i think part of it is that i'm an introvert and here i was 24/7 surrounded by 3 very needy kids, as well as 3 housemates and neighbors that were constantly popping over at all hours of the day. there were several times i would FINALLY get all three kids to sleep and then the neighbor would ring the bell asking if i had some sugar she coudl have. immediately all three kids would wake up screaming.

    i wouldn't wish twins on my worst enemy. they're great to have now that they're older. but those first two years were hell.

  23. It's a novel by Nicholas Sparks. There is a movie out as well, but I haven't seen it. Without giving too much away, the woman has Alzheimers and she forgets the man, but in a way their love and connection is not lost. It's really a beautiful love story.

  24. Christene had very bad PPD after Caleb was born. We were three hours from our nearest relatives (sounds strangely like now), had no support system where we lived and I was gone all day at work while she took care of a very needy baby who would only calm down for me. We have a videotape from when her parents came to visit when Caleb was a few weeks or days old (I'm not sure), and you can just see in her eyes and expression that she was just overwhelmed by things. And it only got worse when I switched jobs and was now working almost two hours away (driving, it was only 45 miles) and gone for 12-13 hours per day...

    It kind of creeped back a wee bit when Ben was born. But for that I had gotten permission from my boss at at IBM to work from home 2 1/2 days per week to help her out. So, with Ben, it was alot easier for her, I think.

  25. Mmmm, ummm, that would be worse...bummer.

  26. Kafka revisited.

    I'm really sorry for your mum - and your family.

    How rude not to tell her in advance, as well. >:(

  27. We've gone through months where I've had to give her needles (something I most definitely do not like doing) in her thigh and abdomen. The fertility pills make her very uncomfortable. It just all around sucks...

  28. Ouch dude, please stop with the imagery...ouch. I'm no good with needles and the like. In the past I've had a fainting reaction to the site of blood and all things medically related. That said, I married a nurse, dad's a doctor, mom works in a neonatal unit, and brother works for a hospital (I don't know what he does, nor does my sister). Hate all the shop talk at dinner that my wife and dad try to engage me in...bleech.

  29. Hehe. Christene's a nurse (RN/BSN) and watches all of the bloody shows on Discovery and CourtTV and Dr. Badin on HBO and all. But, if we watch a horror film, she'll get squeamish if somebody gets hacked or killed, and she refuses to watch Dawn of the Dead...

  30. Dude what is up with that anyway?! My wife is the same way. Oh look at how cool it is to see a guy with a tree stump sticking out of his arse, but oh if Jason Vorhees cuts off someone's finger then turn the channel for pete's sake. Insane, simply insane. I can handle the horror stuff because of it not being real factor...sheesh.

    One of my wife's favorite books is some fully illustrated medical encyclopedia...bleech, I won't touch that book with a 10 foot, no make that 100 foot pole...bleech, and double blech.


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