Saturday, November 27, 2010

Catastrophic Reaction


A catastrophic reaction is when a dementia or Alzheimer's patient has a oversized reaction to a small (or non-existent) problem or event.

And that is what landed us in the ER nearly a week ago.

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All day, Mom had been going back and forth to the bathroom, at an increasing rate. Since it was the weekend, TW was home from work to see this. He started timing her, and noticed that, by dinner time she was going approximately every 7 to 10 minutes.

And we could hear her self-talk "Oh my God! Dear Heavens!" over and over again. Always said in a voice that clearly indicated fear, stress and distress... We would try to ask her what was wrong, what could we do to help? She couldn't answer us with anything more than a frantically whispered "Oh my God! Dear Heavens!"

Finally, at bedtime, she was visibly panicked. She was trying to talk, and tell me something, but couldn't get the words out (which was causing more frustration). I followed her to her bathroom, and she frantically began a cycle of toileting, wiping, cleaning, washing, dressing... that went on for more than 30 minutes. I tried to help her, tried to calm her, but nothing worked.

Catastrophic reaction.

I knew that, left unchecked, this could go on for *hours*. So, I did the only thing I could, and we bundled her off to the ER.

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We were prepared. I had the "one sheet" that I carry in the car that details Mom's health, including meds/doseages and allergies. I had extra clothes for Mom, just in case. I had my cell phone (so I could text TW and keep him updated) and I had my iPad (the Hospital has Wi-Fi), and my best secret weapon: Twinks.

Twinks, The Wonder Kid went with us, and was a TREMENDOUS help and support. She really stepped up, and showed so much poise and maturity. She really was (and is) amazing.

We went to the nearest hospital, which is less than 5 minutes from our house, door-to-door.

The intake was as expected; the ER staff was gentle with her, and by the time we were in our little room, she was calm and ready to go home...

To rule out a silent UTI (which can cause all sorts of havoc in the elderly, especially dementia and Alzheimer's patients) the doctor had to have her cathertized, after it became apparent that she was unable to provide a "sample" on her own. They also drew blood, and rushed all of that off to the lab.

The results came back - and as I had expected, there was nothing there.

The doctor proclaimed Mom to be in excellent physical health... except for the vascular dementia.

We were given instructions on medication to help her sleep through the night, and went home having spent about 4 hours in the ER.

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What prompted all of this was one sad, simple little fact: My Mom was scared of her poop.



She went to the bathroom, and didn't understand what her poop was. She was totally freaked out by it, and couldn't deal with it.

This week, we have watched her deteriorate at a speed faster than ever. She is fading away faster than I can absorb it. I don't want to believe it. I want to stop it.

I think I am about to have a catastrophic reaction of my own...

Wednesday, November 10, 2010

My hero, my dad

I don't talk a lot about my Dad here. 

It's not that I don't think about my dad. I do - every day. But there are some days when I feel his loss a bit more keenly. Veteran's Day is always one of those days.

It didn't used to be. Until Twinks was in first grade, that is. That was the first year that we found ourselves sitting on the hard bleachers in the elementary school gym, video camera trained on the little Twinkster, watching her proudly salute the local veterans who were seated as the guests of honor for the program. Suddenly I realized that my dad should have been there. That if he were alive, he too would be sitting down there, beaming at Twinks for all he was worth.

Daddy was a Korean War Vet. He died before they began to raise money for the KWV memorial; he never made much of his service to his country, regardless. He felt it was his duty, and his honor to serve America whenever, wherever she needed him to go, but he would never discuss it much. He was wounded in battle, and then treated at a M.A.S.H. unit, and finally shipped home.

He continued to serve America through his work, right up until his untimely death in 1990.  He was a aeronautical/aerospace engineer, and he worked for and with NASA and the USAF extensively as both a sub-contractor & consultant.  His career spanned everything from the Redstone Rocket to the Shuttle, as well as the F-4 Phantoms to the B-1B.   Any bird, anywhere was the family motto.  Some of my friends were "military brats;  I used to joke that I was like a military brat - just without the PX privileges. 

After 9/11, as a country we seemed to rediscover Veteran's Day. Every year since she was in first grade, Twinks school has had a grander, and grander celebration. Huge, multimedia events that finally grew so large that the gym could no longer hold them, and the entire school would travel by bus to a local Mega-Church that could accommodate the children, the Veterans and the audience.

Every year, I find myself wishing that my dad could see this. That he could have lived long enough to see that American servicemen and women are being appreciated, as they should be. I wish that he could have lived long enough to hear some of the applause for himself, and to learn as so many other veterans have, that his service to our country really is appreciated, even if it was in "the war that wasn't" - the "police action" that sure as hell felt like a war to those who were there.

There are a great many reasons why my daddy was my hero.  One of the reasons - just one - is because he was a Veteran.

Thanks Dad.

If you are, or have served our Country in any branch of the Armed Forces, please know that our family truly appreciates your service to our Country.  Not just today, but every day.  Thank you.

Monday, November 01, 2010

Let's jump into the Wayback Machine!

Dear and Gentle Reader, once again I find myself apologizing for the appalling lack of correspondence on my part. I have no real excuses, other than my duties as a Caregiver, Wife and Mother have kept me from here on a regular basis.

And I *miss* here.

I find myself, at least a dozen times a day, mentally composing blog posts. Many, many things have happened in our little corner of the world that I wanted share with you, but I have (literally) not had the time.

And so, as promised - one hideously long and seriously boring post about what's been going on "behind the scenes" at our little cottage. (You have been warned!)

March 2010: We "celebrated" the anniversary of Mom moving back home with us. Because she continues to decline, it was less of a "celebration" and more of a "let's have a little bit of cake!"

Twinks had Spring Break, but spent most of it sick AND going to play practice. So, not much of a "break" really...

April 2010: Hospital City holds the annual Spring Outreach Clinic in the Greater Metro. Twinks goes in for what we thought would be a "routine checkup". Her feet are molded for new orthotics, but then the doctor in charge decides that she needs to be evaluated for surgery. In Hospital City. The appointment is scheduled for the Tuesday after Memorial Day Weekend. My only consolation is that Twinks will be out of school by then, and TW volunteers to take off work, and stay home with my Mom, so that Twinks and I can have some "girly time" on the trip, without worrying about the logistics of caring for my Mom as well. Did I ever tell you what a wonderful man TW is?

May 2010: iPad. One for Twinks, one for TW & I to share. Yes, it is magical. And a bit heavier than I would like, but find myself using it much more than I expected I would. My first Apple product! Surely, somewhere, a tiny bit of Microsoft Hell froze over...

Memorial Day Weekend: 3 day sojourn to Hospital City. A tale unto itself, it is a driving force (pun intended) in the events that transpire in June. TW insists that Twinks and I leave on the Sunday of Memorial Day weekend; it is the middle of the holiday weekend, and so traffic on that day should be lightest. This means we will overnight 2 nights in Hospital City. I have to leave the mini-van for TW to transport Mom around in, so we rent a Hyundai Sante Fe for the trip. Twinks is jazzed about the satellite radio. I am looking forward to spending Monday, Memorial Day going around Hospital City with Twinks and having a tiny bit of respite from taking care of Mom.

The drive down is non-eventful, and the weather was nice as well. When we get to Hospital City, our room is ready at the new Homewood Suites that we are staying at, but the rental car has a problem; the rear window falls down into the track, and can't be brought back up. We contact the rental company, and go to the airport to exchange the car. When we get to the airport, they don't have another Sante Fe; all they have is a Kia Soul.

 Twinks nearly swoons with joy - this is the "Hamster car" - the one from the commercials with the Hamsters that drive the cute little car around. She has had a crush on that car since the first time she saw it! We drive it off the airport, and I am in love with it before we get to our hotel. Monday, we have fun; driving around in the little Hamster car, and shopping, and eating at favorite restaurants.

Tuesday, we get up early, and follow our customary routine on Hospital Day. Check out by 6:30 am, Hospital by 7:00 am, we are eating breakfast by 7:15, and waiting for Hospital Day to begin. At 8:00 am the Clinic opens, and Twinks goes back for "weighs and measures". We head over to x-ray, and then back to the waiting room to wait for an exam room. Once in the exam room, Twinks is asked to return to the x-ray department for additional views. This time, they take the x-rays in a sitting position. Twinks does "the walk", where she walks up and down the hallway in front of doctors and PA's and Interns and Residents. They evaluate her gait with shoes on, and shoes off. Back in the exam room, measurements are taken very carefully.

Finally, the verdict: no surgery - but she needs to wear the orthotics that are waiting over in the orthotics and prosthetics department. The orthotics are fitted, but the shoes we brought are wrong. Brand new shoes - and they won't work with the new orthotics. So, we go to the Mall that is just two blocks over from the Hospital, and find Twinks some amazing shoes. Shoes that (we hope!) will work. Back to the Hospital, and the wizards in Orthotics whisk away the shoes to be fitted with an exterior lift. When the shoes come back, they have cut off the original sole of the shoe, fitted the lift material (that matches the shoe) trimmed it, and glue the original sole back on. You can't tell that the shoe has been "lifted" unless you look very closely. Twinks is happy - the new orthotics fit just right, the lift helps almost instantly, and we are driving home in a Hamster Car.

We make the drive home from Hospital City just fine; I fully expected that the "magic" of the little Hamster Car would wear off by the end of the 400 mile drive. We arrive in the driveway, and TW is bemused by the little Hamster car - he drives it after we get home, and finds himself equally enchanted by it. When I take it back to the rental counter on Wednesday, I realize that I could happily get into that little Hamster Car, and drive another 400 miles.

June 2010: I get a call from TW while he is at work - he has been injured, and will need to see an orthopedic doctor. Because it is work-related, our list of doctors to pick from is fairly short, but luckily we know one of those on the list, and we pick him. In very short order, TW goes for an X-Ray, then an MRI, and then to Dr. Knee. Dr. Knee says "Hi, good to see you - and I'll see you again in three days for surgery". Surgery goes as well as can be expected - TW has torn up the meniscus. Dr. Knee cleans up the tear, bevels back the edges, and we go home with an ice chest contraption that has an aquarium pump in it that is supposed to keep the swelling down. And as a bonus, some nifty pictures of TW's meniscus, "before" and "after". I spend the next two weeks doing nothing but making and bagging ice; the little ice chest contraption works, but the heat from the pump melts the ice faster than we expect. Before the end of the month, TW is in physical therapy.

Up until now, Mom has always ridden in the front passenger seat of the mini-van since she came home nearly 3 and 1/2 years ago. She can't easily or safely get in and out of the back of the mini-van, where the doors are equipped with child-locks. Increasingly, Mom is grabbing the door handle of the mini-van when we are driving down the road. We are now faced with a dilemma: we can't continue to transport Mom in the mini-van safely. TW drives a little Ford Festiva to work every day; it's in excellent condition, (Oh, how he loves that funny little car!) but not practical for driving Mom in either, as we would again have the door handle issue. We need a vehicle that Mom can get in and out of easily, and that has back doors - with child-locks on them. We want it to be fuel efficient, and to be something that we would be happy to drive for at least the next 5 years or so.

This leads us back to:

HAMSTERS!!! 

We bought a Kia Soul (yep, the little car from the commercial with the Hamsters, and our recent adventure to Hospital City) and I haven't had this much fun driving since I was a teenager! I find myself *inventing* reasons to drive now - I love hopping into my little red Hamster Car and zipping around town. SO much fun! We got the red color (called "Molten") and I still smile every time I see it in the garage. :)





July 2010: My birthday. I am now 49 years and 13 months.

And, yes, I have an iPhone4. Goodbye Windows Mobile; I am now "app savvy". For once, my tendency to plan ahead pays off: the bubblegum-pink ultra-girly Bumper I ordered along with my iPhone prevents me from experiencing the dreaded dropped-call syndrome. Got one for Twinks, too. TW decides to wait, and see if we like ours. He's not a total technophobe, but, like a lot of people, he doesn't like change, either. That crackling sound? More of Microsoft Hell freezing up solid...

TW's physical therapy sessions (three times weekly) continue. While he is "progressing", we have now learned that Dr. Knee believes he won't regain 100% function of his knee. TW is in a lot of pain, all the time; in part because there was so much damage. I wish that I could take his pain for him - I blew out my left knee when I was 14, and have lived with the resulting pain and limitations for nearly 36 years. I'm used to it!

Twinks takes her drivers exam - in the Kia Soul - and passes! She is a licensed driver! The first day she drove away from the house, alone, I was TERRIFIED. But she really is a good driver, and has proved to be an *enormous* help to me. I can send her on errands, and because she will be able to drive herself to school, TW & I won't have the pickup/dropoff routine for the first time in 12 years. I actually got teary-eyed at that thought; another milestone passed.

August 2010: Twinks goes back to school - she is a Junior in High School this year. A Junior. I can't believe it! Virtual School again this year - and her two on-campus electives are in the afternoon this time, instead of the morning. I can't decide if I like that, or not. It was nice when she went to the campus in the morning, because it gave us the rest of the day after lunch, if we needed to run errands, or take Mom to the doctor. But, since she is more active in her Drama class this year, it will work out well - she can just stay up at school for the after-school play practices. I think it will also be nice this winter, especially if we get a lot of snow and ice - the streets will be in much better shape by the time she has to leave for school. So that will be a big plus.

TW's physical therapy finally ends. The last session is spent measuring his progress, to see how much range of motion he got back, etc. He can walk fine now, but still can't do stairs. Dr. Knee tells him to stay off of ladders and no squatting. Memo to Dr. Knee: He is a mechanic - an aviation mechanic. He (literally) lives on ladders and scaffolding all day. :::sigh:::

September 2010: Labor Day comes and goes too quickly. I have my routine exam at the dermatologist, and mention that the sunblock she prescribed isn't working. And that it burns any time I am in the sun. Itches too. And I don't sunburn any more - I have these raised red bumps. She does a biopsy, and calls me three days later: I have PMLE - Polymorphous light eruption. Dermatologist gives me a prescription for a rather scary-sounding medicine that is supposed to help, but it will take up to six months to see results, and in the meantime, I need to avoid being in the sun if at all possible. It explains a LOT - why I feel so tired and cranky and icky after working out in the yard, or after an afternoon of driving or sitting in the front seat. I remember that one of my Dad's sisters had PMLE, although at the time, no one knew what it was; it was just called a "sun allergy" and she was pretty miserable as she got older. Sadly, she was killed in an accident before the scary medicine was available for PMLE sufferers.

TW gets his iPhone4. He is amazed (and delighted) at how fast he can burn through an iTunes gift card in the App Store. Just in the nick of time, I introduce him to the word "free", and show him how to find no-cost Apps. He is having way too much fun with his new toy phone.

My Mom takes a turn for the worse, and for the first time in over three years, we are adding a medication to help control some of her symptoms. She is progressing more rapidly now, and we see changes every month, sometimes every week.

Twinks finally gets her long-awaited for MacBook Pro. I have to confess, I am beginning to see why my Mac-afflicted/addicted friends have been so loyal to Apple all of these years. It is so easy to use, that I find myself over-thinking how to do things. Even TW is impressed when he sees how quick and easy it is to install our networked color laser printer.

October 2010: Mom continues to decline slowly. She no longer laughs or smiles at all, and has begun to retreat within herself. She no longer does any of her "puzzle books" (mostly find-a-word and large print crossword puzzle books) and she hasn't colored in her Dover art books for months now. She simply sits, and stares, all day long. Generally in the direction of the TV, but I feel very strongly that there is no comprehension now. None at all. She can, and does still dress herself, feed herself and toilet herself, but it is strictly by rote; there is no ability to learn or process new information at all.

The fall colors are out, and this year they are amazing. I try to get out with my camera - the Nikon that I got for Christmas last year, but events conspire against me.

TW got a MacBook Air 11. He falls in love with it instantly - the fit and finish, the light weight, the crisp, bright, even screen... And of course, how easy it is to use. Suddenly, Mr I-don't-want-to-change is All About The Apple Store, and he won't rest until I have an Apple, too.

I had planned on nursing my Dell through another year or so. However, events transpired, and just about a week later, I was at the Apple Store myself, walking out with a MacBook Pro. Somewhere, Bill Gates shivered, and didn't know why as the last of Microsoft Hell surely froze over solid. I cut my computer chops on DOS 2.3 - and have been using Windows since the beginning. And although I do like W7, what I have never liked about Windows (in general) is how *hard* you have to work to get everything to... work. But with the Apple products, you don't have to jump through all of the hoops - stuff just... works. Amazing.

Twinks has Fall Break. Again, she has play practice, and a sinus infection. We take Mom to the beauty shop to get her hair washed and cut, but otherwise, it's quiet.

Mom is now almost like a doll. A beautiful. sweet doll; we must lead her by the hand, and she has to be watched over 24/7. Her beautiful blue eyes are nearly completely vacant now; she has almost no expressions or emotions. I can recognize her physical form, but increasingly, I feel like her spirit is withdrawing from this world, and packing for the trip to the next.

Twinks and I sat on the porch, on Halloween evening, and handed out candy. We talked about everything - about how different Halloween is now, versus when I was a kid. About what it was like when she was born, and everyone who came to the hospital that day. About how teenage boys are stupid, and shouldn't be allowed out without direct supervision. And lots of other stuff. It was a nice evening - the weather was only just cool enough to make you shiver a bit, and a tiny breeze rustled the dry leaves just enough to give you goosebumps.

November 2010: Here we are... All caught up, at last! If you made it this far, I appreciate your loyalty, not to mention your sheer tenacity! You are to be commended. I would give you a cookie, but I ate them all while I was waiting for you to get down here.

Thanksgiving is next. Join the TCF movement!

Thank you, again, Dear Reader. For coming back to read that rather lengthy missive, and more importantly, for sticking around while I wasn't here. I'm glad you are here, my friend. :)