Change of Pace

Funny how much of a blur the last month is now that I'm trying to sit down and reflect/report on it. Surely something notable happened...

My mom has settled into her new home and usually seems like she's fairly comfortable living there. At the same time -- and this might be because I usually see her later in the day when she's tired -- her ability to communicate seems to be in steady decline. Almost every evening she tries to tell me something, sometimes good, sometimes bad, but then ends up getting incredibly frustrated with me when I just can't manage to get the gist of what she's saying. It's not always easy for me to gracefully accept her anger and frustration at me, but if I were in her shoes and having to deal with the ever increasing confusion and isolation, I bet I'd be pretty unpleasant myself.

Case in point, there are a few of my mother's fellow residents that are on the prickly side. Either they say catty things to my mom or have too much to say about what Nathan does when he's visiting or are just generally bossy. Every once in a while someone does something to raise my mama bear hackles and I don't do a very good job of biting my tongue.

Last night the residents were sitting down to watch a movie and Nathan and I were saying our goodbyes to my mom. The lady who is the self-ordained organizer of the movie nights took it upon herself to tell us that children were not allowed at the movies. We were clearly about to leave!

I should have just gritted my teeth and smiled at the cranky old lady, but this is my mother's home and it just pissed me off to have some random soul tell me that my mom's grandson is not welcome there. (Heck, I'm my mom's child, so maybe I'M not welcome either!) So I fired right back that neither I nor my child had any interest in wasting our evening with her anyway. She tried to explain that she doesn't allow adults to talk during the movies either, so I told her that she should follow her own rules and keep her mouth shut.

Yeah, not my finest moment. And ironically, since my mom is already so on edge about what the other ladies at the residence think of her, my "defense" of my mom's rights actually left her feeling more uncomfortable and embarrassed.

Oh well. We went back today for the big annual Easter brunch with a petting zoo and clowns and an egg hunt. When I saw the movie lady she smiled at us just sweet as anything, so I guess she probably doesn't even remember the incident. I'm almost positive my mom doesn't!

Oh, there were a couple of other things worth mentioning. My mom is going to be receiving an inheritance from a long lost great-uncle who invested in oil in Montana in the 1920s. Crazy, huh? I think it will probably come to less than $500, but it still makes for an interesting story.

And more significant for us financially, I'd never gotten around to starting the claims process on my mom's long-term care insurance and just the month they made us an offer to make an inflation adjustment in the coverage terms, so it actually worked out really well that I didn't make a claim earlier. That will cover our assisted living costs for another two or three years, allowing us to keep building my mom's resources. Sadly, I think by that time we'll probably be looking at the much more significant costs of a nursing home, but this gives us a little more time to prepare for that and make sure that we're prepared to apply for medicaid once all of my mom's retirement and savings are gone.

Which means that I really need to set up that appointment with an elder law attorney. It's on the to do list, so hopefully I'll be able to write about that experience in a blog post coming soon.

Not like I was getting a ton of comments anyway, but I finally had to limit comments to "authenticated" readers, whatever that means. As far as I know, my friend Jen is the only one out there! I was starting to get hundreds of junk comments every day and it was getting to be a pain to empty out my in box all the time. I think most of my few remaining readers know my email anyway.

There hasn't been a whole lot of free time for blogging lately. These days, nearly every one of my waking moments is spoken for. I wake at six, nurse Nathan, let the dog out, put the coffee on, fix us breakfast, get dressed and try my best (usually unsuccessfully) to get out the door by 7:35. An hour drive to work, where I can sneak in a little bit of personal stuff like bill-paying, doctor calling, emailing, etc. at lunch, then an hour drive home. I try to have dinner staged or in the slow cooker, but even then it takes a little time to get food on the table for grown-ups and baby. Then it's off to visit my mom for an hour or two with Nathan and hopefully get him home to bed by 8 or 9. The next hour or so seems to go up in a mysterious cloud of smoke and then it's time for bed. I don't know how I'd do it if Jack wasn't able to stay home with Nate and we were having to get to and from daycare too.

Weekends are a little better and I get in more quality time with Nathan and my mom and a minimal amount of cleaning, organizing and grocery shopping. I don't know when I'm going to deal with my mom's and my taxes!

This past weekend felt like a blur, but I did get in a four mile run and took Nathan to his first concert. The concert was a bit of a splurge, but definitely worth it. I was worried he was too young to stay focused on the music, but the show catered to a very young audience and he spent most of the time dancing in front of the stage with the other kids.

The four-mile run was somewhat less fun, but I really do want to get back into some sort of exercise routine. I know it's been a while because I couldn't even find my orthotics that I generally NEVER run without. I noticed that the friends' site that hosts this blog doesn't even list me among the official "running blogs," so I'm just appreciate that she's still letting me write here. It's hard to imagine right now, but maybe I'll be a real runner again someday....for now I'm trying to keep my goals modest and aim for being a regular jogger for a while.

Ugh, I always procrastinate updating here and then when I finally do get around to writing, I don't know where to begin!

I ended up taking a half day on Wednesday to take my mom to her neurologist. We hadn't seen here since last summer when she recommended we go to the Wash. U. memory clinic. That doctor suggested that my mom's symptoms were really more indicative of early onset Alzheimer's rather than MS so that called into question whether it was necessary for my mom to still be on the MS drug. They're very expensive, somewhat toxic and she hated being poked with a needle three times a week, so I was hoping the MS specialist would give us the okay to stop with those, which she did.

The doctor put my mom through the usual routine of questions and neurological tests. It was all rather depressing, since it seemed to me that she found the tasks even more difficult than they were just a few month ago. Not shocking, but the progression of this thing is just so relentless and untouchable... it leaves you feeling utterly helpless.

Thursday was a much lighter affair as I got to spend some quality time with little man Nate. We started the day by driving downtown so I could snap some photos for a family friend who needed some images of the old Catholic basilica with the gateway arch behind it for a conference she is organizing. That accomplished, Nathan and I went over to the arch itself to explore a bit. I decided that he probably is a little too young yet to be impressed by the view from the top, so we just wandered around the grounds for a bit and visited the underground history museum.

He really is getting to a very fun age now that he can get around on his own two feet. I really enjoyed watching him with the pygmy goats they have there. Kind of disgusting animals, but he was so funny as he went through the progression of being scared, then just intimidated, then curious and then finally he was chasing after them and pulling their tails and ears and fur just like he does at home to poor Rudy.

By the time we ate dinner and visited my mom, we were completely exhausted.

Friday was significantly less productive. We got Rudy a bath at the pet store and visited my mom. That was about it.

Okay, off to bed here. I'll catch up a bit more tomorrow.

Here's my mom's new room set up. It's slightly less square footage than the respite room, but otherwise it's not all that much different. The living and bed rooms are separated by a hallway with a kitchenette in it rather than a dividing wall/shelf thing. I just realized that I forgot to take photos of the bathroom, but I think I did rather a good job of that with a pretty seashell shower curtain and beach themed pictures on the walls. She seems to like it well enough, so that's what's important. I'm going to try and take over a shelf unit this weekend and eventually get some more things o the walls, but for the most part the decorating is complete.

The next week may be a bit complicated, since Jack's Uncle Chuck passed away yesterday and he'll be going out to Philadelphia for the funeral. We're not exactly sure of the day yet, so I'm not sure which days I'll have to ask off from work or try to cobble together some sort of childcare solution. It's a bit of a quandary since we've never really had Nathan cared for by anyone but us, with the exception of one evening with Jack's sister and a morning with my grandmother's neighbor in Ohio. If only she was here in Missouri!

I scheduled my mom for an appointment with her neurologist on Wednesday, so hopefully that will be one of the days that Jack's away. I'll feel a little less guilty about asking off from my brand-new job if it's too take care of BOTH of my dependents.

So it really is part of my job to play around on Facebook and YouTube and explore other universities' websites, all in quest of ideas and inspiration to improve the SLU.edu site. And there's some added pressure these days since the school basketball team apparently has a real chance at getting a berth in the NCAA tournament. If that happens, we can expect to suddenly hit the radar of a lot of new prospective students who just might pay a visit to our website to see what the deal is with SLU. It is unfortunate that we aren't more commonly known as St. Louis, since there really aren't many words starting with the letters SLU that have a positive connotation. Slum, slut, slug, slur, slurp....okay, I can't think of any!

One of the problems with our current website is that it features a bunch of really slick, professionally produced videos that no one really bothers to sit through.

Additionally, almost every page features snazzy photos based banners that rotate every time the page is loaded, except 1. who bothers to load a page over and over again and 2. a lot of the photos are old, old, old and not particularly relevant to the rest of the content on the page.

And last, we have this odd little mascot that looks like an albino version of Shrek and it takes some pretty serious electronic digging to find the pages (and there are a few) on the website that explain what the hell a Billiken even is.

So these are some of the things that I'm going to have to address over the next couple of weeks in the face of Selection Sunday, now only about three weeks away. Maybe SLU won't make the tournament after all and even if they do, maybe it won't make much of a difference in our web traffic, but, just in case they do and it does....we need to be ready.

A couple of fun things I've found:

BYU came up with a fun and very watchable behind-the-scenes video for a photoshoot that involved pouring buckets of water on scantily clad young women. Oh, those Mormons...

I have plans to put together my own fun video about SLU's student- built, solar-powered golf cart (golf carts are a thing here), but it probably won't be as fun as wet gymnasts.

And I'm pretty sure this campaign stems from last year's sad disappearance of a female Indiana undergrad last summer, but nonetheless, it is entertaining and compelling and likely to hold the elusive attentions of those teenage eyeballs we so covet.

So somehow I developed the misconception that once my mom had used up her month of respite care at Autumn View, we'd be able to move across the hall into another partially-furnished room with only a minimum of effort. Where I got this idea, I don't know, but the reality of the situation was that the new apartment was completely bare. I came to this realization Friday afternoon and needed to get the move done by Sunday!

So the nugget and I set out early Saturday morning, first stop Weekends Only furniture. Bed, mattress set, night stand, loveseat, chair, side table, tv stand and three lamps.
Pause for air.
Then, Bed, Bath and Beyond. Quirky wall clock, towels, washcloths, comforter, sheets.
Lunch break. Nathan is a fan of Chinese food.
Best Buy. Cheapest flat screen tv I could find....looks pretty much like the pricey ones.
Kohls. Pillows, beach themed stuff for the bathroom walls.
Phew.
We swung by to hang with grandma for a bit and then finally got home again a little after 8 p.m. The child was a super trooper.

On Sunday, the furniture was delivered and I managed to get things pulled together enough for my mom to move it. She had a bit of a head cold, so I'm sure all the activity was a bit overwhelming and confusing, but she seemed pleased with how it looked. The best part was when I heard her tell her friend Mary that, "they gave me my OWN room!"

Monday night Jack went over with me and built the tv stand and the place looks pretty darn good. I still need to put up curtains and get some more stuff up on the walls, but I'll take some photos this week of how it looks so far.

I'm not sure it quite counts as her 15 minutes of fame (or even 15 seconds!), but you can just see my mom in the dining room part of this commercial in the upper right-hand corner of the picture.

The man interviewed for the ad is just the nicest fellow and he and his wife keep an eye on my mom and go out of their way to chat with her and make sure she's doing all right. Their grandson and his family actually live right outside of Columbus.

In other news, I'm just about recovered from the whirlwind trip Nathan and I made to D.C. last weekend to meet up with old pals and attend the memorial service for my high school friend Lance. Or rather, linger outside the door of the service....Nathan decided he wasn't really in the mood to nap at that point after all, so I actually missed all of the happy memories and laughter and was finally able to sneak into the theater just in time for the sober minute of silence and candles. Oh well, I'm still glad I went.

And work continues to go well. My office is in the building on the left and my window looks out on the church next door. There's no forgetting that I work for the Catholics now!

So the good news is:

• That I really like all of my new co-workers
• The long commute isn't getting getting on my nerves too badly yet
• My mom seems to be much less anxious and her mood has improved dramatically. She's quite chatty most days, though she's still very difficult to understand. She even appears to have a gentleman admirer who likes to sit with her during group activities. He's a pleasant enough widower, 16 years her senior, who is also facing the challenges of dementia. I think she finds his attentions quite amusing.
• After a couple of brutal nights where he cried...nay, shrieked for periods of an hour or more, Nathan only needed to be "comforted" once last night. I put that work in quotes since my gentle words of soothing generally only serve to intensify his squallings. He seems to be adjusting to full-time daddy care with much grace and good nature. I think he probably gets more chocolate during the day now, so that may be a contributing factor to the smooth transition.

• My grandmother is back in the hospital with heart issues. I'm being told the situation is serious, but I'm not sure of the exact details.
  
• One of my close circle of friends from high school passed away unexpectedly on Friday. I learned about the news this morning from a facebook posting and am still trying to get my mind around the reality of the situation. I keep fantasizing that the whole thing is just a form of social media performance art...it does seem like the type of thing he might conjure up. If only the outpourings of grief from his other friends and family didn't seem so damn sincere. I can't imagine not attending his funeral or memorial services in DC or Virginia, but at the same time, I can't imagine how I could.

Day two of work is behind me and so far, so good. I really like all of the people I've met so far and it looks like I'll have a lot of freedom to define the specifics of this job. Actually accomplishing whatever goals I set for myself might be challenging due to a combination of office politics and institutional inertia, but it seems like shaking up the status quo might be part of the fun. The first thing I need to do is put together a wish list of computer, camera, video, audio and lighting equipment and software that I'll need to do my job, but so far I've been a little stymied by uncertainty in terms of what price point I should aim for. Particularly when it comes to buying a camera and lenses, it's hard to justify spending as much as I have on my own camera, but if I downgrade too much, then I might as well just USE my own camera. Maybe I'll leave that request until last and at least get myself set up with everything else.

Nathan has thus far tolerated my long absences remarkably well. It's best if I take the subtle approach when I leave the house and sneak out while he's still asleep or otherwise distracted, but it sounds like he and Jack have enjoyed their man time.

My only complaint is that the hour-long commute doesn't leave much wiggle time in my schedule. I leave the house at 7:30 am and get back after 6, so by the time we eat dinner (assuming I've done the prep ahead of time), put Nathan to bed and run over to visit my mom, it's already past my own bedtime. Last night, my mother had already crawled into bed when I got there, so I had to wake her up to help her change into pajamas and brush her teeth. Honestly, I'm doubtful that she even fully registered that I'd been there. I'll definitely be glad to get to the weekend so I can spend a little more meaningful time with her.

She does seem to be settling in a little better to her new surroundings. The medical directer told me that she actually seems to do best when I'm NOT there. She still tends to shut down on me whenever she gets the least bit upset or frustrated, but we're finally starting to have the occasional good visit too. We had a lovely morning last Saturday watching Nathan explore the activity room while I filed and polished her nails and she seemed to enjoy watching a movie on TV that evening with Jack, Nathan, Rudy and I.

Jack and Nathan stopped by for a brief visit this afternoon while I was at work and reported that she was absolutely chatty, though still difficult to understand. We've still got two more weeks of allowance on the respite stay before we'll need to commit to paying a sizable community fee, but I'm starting to feel a little more confident that the staff there will be able to sufficiently meet her care needs.

So all in all, the week has started off on a positive note. I'm going to take my camera in with me to work tomorrow so I can show off some of the quirkier aspects of my new workplace. Apparently the real exorcism that the Exorcist movie was based on occurred right outside my office window and there are interesting architectural oddities to the building like a door that goes nowhere and an entire wing of the fourth floor that nobody uses. If I can't find out the real stories here, I'll just have to make something up!

Some relatives have asked what my mom's room looks like, so I'll post a few photographs:

Four days in, it's still not clear if this assisted living thing is going to work. The staff at the facility is really nice and the other residents seem very welcoming to me, but the anxiety of the whole experience seems to have left my mom physically and emotionally drained and extremely passive.

Most of the people in my life have been very supportive of the decision to try this route, but it's still hard not to constantly question whether there is a better option out there. I was so reassured by the warmth of the nurses and aides that I met and several other residents assured me that the first week there was hard for everyone and that once someone was given a chance to adjust, they really enjoyed the sense of community and all of the activities. It sounded so promising and it really did look like everyone there was pretty active and happy.

But there have also been other things that make me doubt whether my mother's dementia has already progressed too far for this living situation to work.
I stopped in one afternoon and my mom was wandering on the 3rd floor looking for her 2nd floor room. Luckily the other residents recognize me and Nathan as being her people, so someone immediately told me where she was.