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      <title>Change of Pace</title>
      <link>http://www.running-blogs.com/chelle/</link>
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      <copyright>Copyright 2013</copyright>
      <lastBuildDate>Tue, 29 Jan 2013 15:09:53 -0500</lastBuildDate>
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         <title>Happy New Year</title>
         <description><![CDATA[So far, so good for 2013, though unfortunately not quite as happy as the tail-end of the old year. December gave us a bit of a break after the gero-psychiatrist adjusted my mom's medication and her mood seemed to really lighten. She was consistently less anxious and seemed to connect better with other people, even towards the end of the day. Nothing changed since then in terms of what medicines she's taking, but maybe she developed some tolerance to the dosage, since lately it seems like she's back to experiencing more down days and she's a lot less alert during my weeknight dinnertime visits. It's worth a call to the doctor though, so I'll have to see if he has any theories.<img alt="dgphoto.jpg" src="http://www.running-blogs.com/chelle/dgphoto.jpg" width="400" height="300" />
Having said that, she's still not nearly as anxious and argumentative as she was back over the summer. Despite a vicious flu season in these parts, she's staying strong and healthy and even though she probably covers several miles a day with all of her restless walking up and down the halls, she's still got enough of an appetite to keep her weight up. It's just been so rare through the whole process of this disease for things to ever get better, I just got a little spoiled to see those glimmers of optimism and personality again.

Another happy thing to share is that my mom has been able to visit with her sisters several times over the past couple months. One of Erin's ongoing stories is based in Missouri and she has been able to schedule STL layovers during some of her other travels. Sheelah and Brigid were just here last weekend. The excitement and conversation does seem to leave her a little more tired than usual, but I really do think she recognizes everyone and enjoys the interaction. 

Other than that, things are pretty much the same. There's been a little bit of turnover with the care-taking staff, but the core cast of characters has remained pretty consistent. The same is true as far as the other residents, though I worry sometimes that not everyone will make it through the winter. Except Millie, of course. My mother's cantankerous, 104-year-old former roommate will probably outlive us all.]]></description>
         <link>http://www.running-blogs.com/chelle/2013/01/happy_new_year_1.html</link>
         <guid>http://www.running-blogs.com/chelle/2013/01/happy_new_year_1.html</guid>
        
        
         <pubDate>Tue, 29 Jan 2013 15:09:53 -0500</pubDate>
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         <title>Words that are too hard to write</title>
         <description><![CDATA[I've been struggling of late when it comes to updating the blog. The problems is that this forum really strains to fulfill several purposes and at times the needs of each are at odds.

This is MY blog. For most of its life it was a running blog, though in reality it really started off as more of a self- involved relationship blog. More recently it functioned as a photography blog.  All of it was a record of my life and my personal struggles and triumphs and whatever advice or cautionary tales I could pass along to others interested in those subjects.

And now? I guess it's more of a caregiver blog or occasionally a mommy blog (though, for the record, I DID run today). The problem is that these sorts of blogs are about people other than myself, so every entry involves at least a modest intrusion on someone else's privacy. 

Besides that, it no longer really seems like an appropriate forum to just vent or gripe and complain, even if sometimes that's all I really want to do. I want to stay upbeat and positive and use the blog to share heart-warming and encouraging stories about life with MS, but lately all I want to do is just rage against the unfairness of it all. Even when there are hopeful developments to report (she's more engaged with other people, her verbal communications are easier to understand!) they tend to come with trade offs that hardly seem to justify the gains (she keeps hitting and pinching people hard with no warning and tells me that people want to kill her and that she hates me).
<img alt="MomNate_sm.jpg" src="http://www.running-blogs.com/chelle/MomNate_sm.jpg" width="450" height="286" />
So, what's left is to just try, try, try to appreciate the fleeting and occasional moments of tenderness and connection that do still happen. Nathan's hugs that sometimes calm her spirit for a minute (as I hold my breath and stand ready to intervene if she suddenly grabs him too roughly) or the heartbreaking apologies and tears that sometimes come after she's said or done something particularly hurtful. 
"Did you mean to hurt me mom?"
"YES!"
"But why did you want to hurt me?"
And in a very small, defeated voice, " I don't know..." 
]]></description>
         <link>http://www.running-blogs.com/chelle/2012/11/status_quo.html</link>
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         <pubDate>Wed, 14 Nov 2012 23:11:01 -0500</pubDate>
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         <title>How Rudy&apos;s Doing</title>
         <description><![CDATA[Just a little update of my mom's dog, Rudy.  She hasn't seen him in a while since he stresses out so much in a new environment and now that she's a little further away, I hate to skimp on a visit with her just so we can take the dog home. Next time I take him for a bath though, I'll try and swing by Delmar Gardens with him.

Since he had about half his teeth removed last year, this old mutt's had a new lease on life. He still has some toiletting confusion at times and his eyesight and hearing are atrocious, but he's lean and healthy and even downright playful at times.

For all of our worries about his temperament, he's remarkably patient around Nathan and sometime seems to almost enjoy his company...or at least tolerates it! For his part, Nathan is very fond of old pooch and I'm not looking forward to explaining where OOOOdy went when that time comes.
<iframe width="500" height="281" src="http://www.youtube.com/embed/qnPHD_qJueo" frameborder="0" allowfullscreen></iframe>

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         <link>http://www.running-blogs.com/chelle/2012/09/how_rudys_doing.html</link>
         <guid>http://www.running-blogs.com/chelle/2012/09/how_rudys_doing.html</guid>
        
        
         <pubDate>Sun, 30 Sep 2012 22:28:49 -0500</pubDate>
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         <title>Personal Politics</title>
         <description><![CDATA[<img alt="Leftist.jpg" src="http://www.running-blogs.com/chelle/Leftist.jpg" width="400" height="260" /> 
<strong><font size="4">Ah, Missouri...of course, he IS in fact turning left.</font></strong>
<br>In this current election/convention season, it's impossible to avoid the constant barrage of political commentary, though not being a television household, at least we're able to avoid most of the overwhelming bitterness contained in the attack ads. Most of the Facebook newsfeed chatter aligns pretty closely with my own beliefs, but living in a red state, you never know when a neighbor will throw out some comment about how much better off we'll all be after we get rid of Obama or you pull up behind someone in traffic who hasn't bothered to look up the definition of socialism.

I can, of course, say that all of this is relevant to a running blog following Paul Ryan's outlandish claim of being a sub-3 marathoner. Maybe he is just completely clueless and this says nothing about his character, but I'm still suspicious as to how you forget just missing the four-hour barrier in the ONE SINGLE marathon you've ever run.  Yeah, I know it was more than 20 years ago, but it's the same year I ran my first marathon and I sure as shit never forgot missing MY goal time for that race by one measly minute.  If your brain can't retain that basic bit of personal trivia, then what does THAT say about you?

This thread pertains to my mom as well since I'm having trouble figuring out any legal and ethical way for her to vote in November. I have no doubt that I could choose candidates FOR her that would be in accordance with her long established preferences, but voter registration materials state very clearly that powers of attorney do not include the right to vote for someone. I am under no illusions that she could go into a voting booth and do anything more than just stare uncomprehendingly at the buttons.

It really is frustrating though since it is likely to be a close election and even just a few months ago she was verbally expressing very clear thoughts on her opinions of candidates in the primary race. (And every time John Boehner would show up on the Evening News she would perk up and say,  "I just HATE him!") So in addition to everything else this disease has taken from her, it looks like it's effectively invalidated her U.S. citizenship as well.

And finally, the latest update on my mom's condition necessitates a mention of how we spent all day Sunday back in the emergency room after she behaved aggressively towards another resident, putting her hands around the woman's neck. I would have been less surprised if it had been the other way around, knowing this individual, but as it was, Delmar Gardens is obligated to send anyone who is a danger to the self or others out for observation. Which only sort of makes sense since she's pretty much always a danger to herself as much as she's fallen lately. 

So, after four hours at the hospital for bloodwork, a CAT scan and urinalysis, we found out that there were no obvious underlying causes for the incident (other than the fact that Resident R. Is a loud and annoying personality) andf we drove right back to where we started. Everything seemed fine today.

One of the other residents did pass away last night (just the first of many that we'll see there, I presume) so I asked about the possibility of my mom changing to a new room. I'm just worried that she could lash out physically towards her current abrasive 104-year-old roomie and that would just not be good. It's actually happened once already, but fortunately, M. is one tough little centegenarian. The new room vacancy won't work for insurance reasons, but the nurse agrees that my mom and "Granny" are not compatible, so it looks as if a rearrangement is likely to happen soon.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/09/personal_politics_1.html</link>
         <guid>http://www.running-blogs.com/chelle/2012/09/personal_politics_1.html</guid>
        
        
         <pubDate>Mon, 03 Sep 2012 22:30:04 -0500</pubDate>
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         <title>A Morning for Me</title>
         <description><![CDATA[<Table><tr><td>I can't even remember the last time I went running; it has to have been sometime in the spring. But in honor of the men's Olympic marathon this morning I promised myself that I'd find a way to sneak in at least a few miles this weekend. Now that our awful heat wave has finally broken, I have no more excuses.

So Nathan and I hit the road after breakfast and he took a nap (what a life) while I pounded out four and a half hilly, 11:16 minute miles -- more than twice the pace of the runners in London.

Now I've just got to make this the start of a new routine. Though minus the part where I let him clamber around in the little playground adjacent to the running trail until he started acting all weird and I peeked into the play house to find him surrounded by RATS!</td><td>
<img alt="Jogger.jpg" src="http://www.running-blogs.com/chelle/Jogger.jpg" width="200" height="379" /></td></tr></table>  
Not really. They turned out to be baby bunnies. Totally freaked me out for a second though!
<img alt="Rats_orNOT.png" src="http://www.running-blogs.com/chelle/Rats_orNOT.png" width="404" height="198" />
I got a little more exercise in the afternoon strolling up and down the halls with my mom, over and over again.  She's still just so restless, but now that she's got her helmet, the nurses are okay with just letting her walk and walk (and walk and walk). I stayed with her until she was completely exhausted and she let me and a nurse aide seat her in a big BarcaLounger for a pre-dinner nap. The staff all seem to think she's doing better though. Tomorrow I'll give a call to the gero psychologist who saw her on Friday.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/08/a_morning_for_me.html</link>
         <guid>http://www.running-blogs.com/chelle/2012/08/a_morning_for_me.html</guid>
        
        
         <pubDate>Sun, 12 Aug 2012 15:18:10 -0500</pubDate>
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         <title>Family Visits &amp; Hospital Visits</title>
         <description><![CDATA[Tim, Andrea and Gabi made it to Missouri in mid July after a week of unsuccessful house hunting & a loonng drive out from Virginia. The visit already feels like it happened ages ago, but that's because it's been a pretty eventful few weeks since they left.
<img alt="DGNG.jpg" src="http://www.running-blogs.com/chelle/DGNG.jpg" width="450" height="299" />
My mom did seem pleased to see everyone, even if it wasn't always clear that she was exactly clear on who everyone was. Her energy levels were also very limited, meaning that Tim never was able to really visit with her for any sustained period of time because after 10 or 15 minutes, she'd simply doze off in her chair.
Although I had to work most of the days that they were here (to preserve as many of my remaining days off as I could) we still had a nice visit, making it out to the zoo, city garden and Purina Farms. It was fun watching the cousins play together, though by the end I think Gabi was just starting to realize how easy it was to knock Nathan over.

And then. So the day after they left (and of course it was the day after they left) and after I'd already stopped by for an evening visit, my mom is in an agitated mood and rushing around the unit she lives in and she stumbles into the nurses desk hard enough to give herself a bloody nose. Jack was out that evening, so Nathan and I spent the evening with her in the emergecy room until we got the bleeding under control. That was a Thursday night.

Friday, I got a call around noon that they're sending her back to the emergency room for being combative and throwing food at the nurse's aides. The ER docs seemed somewhat mystified about why we were back and what we wanted them to do for us, but one prescribed a different antibiotic for the UTI she was being treated for and recommended a different sedative. This whole experience was especially frustrating because she was supposed to see a gero-psychiatrist at the nursing home that afternoon, but they called for the ambulance before that could happen.

Saturday. For the sake of brevity...more of the same, at a different hospital this time. But this time she was admitted into the behavioral health ward (aka psych ward) for further observation. She stayed there until Friday, then was moved over to the behavioral health senior unit, which has a little bit less of a hospital feel to it and somewhat less screaming.

After a little less than a week there (and minimal improvement in my eyes) she was cleared to go back to Delmar Gardens. We've been back there about two days now and she's still super restless and not very steady on her feet. Especially the ways she walks with her back hunched and her head looking straight down, she remains a very serious fall risk.

The head nurse got her a bike helmet for safety, so it gives her quite a sporty look, but she's so tired now from lack of sleep and rushing about, she spends a lot of time hunched over in a wheel chair, resting her head on a towel and napping.

Next up, assuming we don't have to make more trips to the ER or senior psych...she'll probably do some sessions with occupational therapy to try and help with the posture, we're hoping that the Aricept she started taking will help to stabilize her moods a bit and I'm going to look into whether it would help if we hired some one to sit one-on-one with her for a chunk of each day.

Fact is, the last couple of weeks have been very tough and ultimately, it's hard to tell if her sharp decline of late is the chicken or the egg.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/07/family_visits_hospital_visits_1.html</link>
         <guid>http://www.running-blogs.com/chelle/2012/07/family_visits_hospital_visits_1.html</guid>
        
        
         <pubDate>Sat, 28 Jul 2012 23:59:54 -0500</pubDate>
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         <title>A Matter of Perspective</title>
         <description><![CDATA[It's been a predictable series of up days and down days since my mom moved into Delmar Gardens and all in all, it hasn't been as bad as it could have been.  The caretakers there are definitely familiar and comfortable with the issues of dementia and it's clear that I won't be getting any more late night phone calls letting me know that she's crying again and could I please come over.  It doesn't help with the fact that I know that the crying still happens and that she's still confused and frightened a lot of the time, but at least I know she's with people who won't freak out at the sign of a tear and who know how to redirect and distract her.

The biggest difficulty for me right now is that lately my visits, especially when I come with Nathan, seem to bring her more distress than comfort. I think that she does still enjoy seeing him, but her paranoia has become so acute over the past week, that all she can think about or talk about when we're there is that someone is going to try and hurt him or take him.  When I try to assure her that he's safe and that I won't let anyone take him, she becomes very angry at me (she actually hit me quite hard today!) that I don't understand the dire nature of the situation. This had become an issue at Autumn View Gardens as well, so this is nothing brand new, but her distress over the matter seems even more intense now. 
<img alt="DGC-3sm.jpg" src="http://www.running-blogs.com/chelle/DGC-3sm.jpg" width="425" height="281" />
Now while I feel like I'm quite sane and reasonable in thinking that there's no way any of the frail little old ladies at Delmar G. are capable of stealing Nathan away from me, Jack has pointed out that if you step back for a moment and look at things with complete objectivity, my mom's concerns don't seem quite so irrational.<ol><li>You walk into the place with Nathan on your hip and the event immediately triggers a chorus of, "Baby...baby! Look, look!  There's a baby!  Oh, isn't s/he precious, look at the baby!" This continues at intervals as the audience forgets and then realizes anew that there's a baby in the room.<li>In an attempt to connect with her, the staff frequently asks about Nathan...how's Nathan, how's your grandson, have you seen that little grandbaby of yours, oh, your grandbaby is so cute, I could just take him home with me, etc.  It doesn't help matters.<li>A few of the ladies insist on trying to pick him up and get very agitated when I intervene. They will continue following him around, calling and reaching for him and grasping at his clothes. Even when I tell them that I'd like some private time to visit with my mother, they still follow us from room to room. Not shockingly, Nathan isn't a big fan of this attention either.<li>Many of the women will talk to my mom quite urgently about their own sources of anxiety, most of which are quite firmly based in their personal past histories. Whether it's about a delinquent order of office paper, a sick cousin or the most usual complaint of wanting to go home, the message to my mother usually translates to Nathan being in danger.</ol>I find it intolerable knowing that she is there without me and that she is scared and angry and uncomprehending of why this is even happening, but it is even worse to feel like my visits only exacerbate the situation.  I do feel like this is a safe place for her with a manageable scale and a proficient and compassionate staff.  The level of care is appropriate and fits where we are right now. The only drawback, and it's a total Catch-22, is that some of the other people who require this level of care are intolerable to be around. They often scream angrily and they lash out and they harangue my mom with their own nervous obsessions and they contribute to making her even more anxious. 

But what else is there to do?  Even if long-term care insurance covered home care, our house isn't big enough to make that solution workable. I'm still going to check out the new assisted living residence with the memory unit, but since that's a private pay option, we would still eventually need to move back to Delmar Gardens.

So, for now, this is what we're working with.  And it's not like there aren't any good days...there were a couple of them last week.  It's just that I only seem to manage a blog entry after the bad ones!  

<img alt="DGC-1sm.jpg" src="http://www.running-blogs.com/chelle/DGC-1sm.jpg" width="425" height="283" />
<em>An example of the blood-pressure raising color scheme at Delmar Gardens.</em>

<img alt="DGC-2sm.jpg" src="http://www.running-blogs.com/chelle/DGC-2sm.jpg" width="425" height="283" />
<em>The gratifyingly more subdued palette of my mom's room.</em>]]></description>
         <link>http://www.running-blogs.com/chelle/2012/06/a_matter_of_perspective_1.html</link>
         <guid>http://www.running-blogs.com/chelle/2012/06/a_matter_of_perspective_1.html</guid>
        
        
         <pubDate>Sat, 23 Jun 2012 23:26:03 -0500</pubDate>
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         <title>The Mother Chronicles</title>
         <description><![CDATA[I'm going to try writing in outline form just to make sure I've got the basics covered and then go back when I'm able to fill in the details.

A. Nathan and I got back to St. Louis on Saturday night
<ol><li>Relatively easy traveling with just the kid
     <li>Didn't leave enough time to get to the airport, so couldn't check the carseat
     <li>Missed great photo op of pack mule self
         <ul><li>a. Nathan strapped to my back
         <li>b. Carrying overstuffed diaperbag and the carseat
         <li>c. Big DELTA sign reading "Need Help?"</ul></ol>
B. Texts started arriving with info about various crises in Columbus
    <ol><li>Sat 8:30 pm: She refused to sleep downstairs
    <li>Sun 6:30 am: The caretaker hours need to be adjusted
    <li>Sun 8:30 am: She refuses to take any meds & threw her juice across the room, scaring my grandma
    <li>Sun 4:30 pm: Email request arrives from a family member that I put my mom on Valium or Xanax
    <li>Mon 7:30 am: She refuses to eat or take any meds
    <li>Mon 8:00 am: Grandma is really upset
    <li>Mon 8:30 am: Apologies that this isn't going to work.</ol>
C. I called in a prescription for an anti-anxiety/sedative to try and get everyone at least through the week.  For my mom, but I guess we all could have used it!   
D. Since our plan to move my mom into the not-yet-open assisted living memory unit is not going to work, Jack and I spend the evenings of our "caretaker break" visiting area nursing homes.   We make a suicide pact for our golden years. Tres romantic.
E. Wednesday, my mom had a really good day. 
    <ol><li>"Pleasant, talkative and very mobile" 
    <li>Developing attachments to her caretakers
    <li>MUCH improved appetite, taking her meds crushed in food
    <li>Showing interest in and concern for her mom</ol>
F. Jack's kids ended their week with us early, so we could drive up to Columbus on Saturday. Nathan held up pretty well, but with all the stops it ended up being a ten-hour trip, so a certain amount of crying and frustration was to be expected.
E. My mom was super-subdued when we got there.  
    <ol><li>She was already in bed and didn't respond much when we saw her
    <li>She DID recognize Jack and call him by name
    <li>She didn't open her eyes when Nathan gave her a good-night kiss, but she did make some barely audible kissy noises.</ol>
F. Sunday, it was back into the car for the trip back to St. Louis. 
    <ol><li>My mom expressed a desire to stay in Columbus, of course.
    <li>Lunch at a Cracker Barrel in Indianapolis. Challenging, but successful.
    <li>Break to stretch our legs at a Cracker Barrel in Effingham, IL.
        <ul><li>a. She pulls her pants all the way down in the main part of the restroom and refuses to go into the stall, starting to cry...while I'm trying to change Nathan's diaper.
        <li>b. Back in the parking lot, she tells me she's not going with us and won't budge.
        <li>c. Cars wait for us to move out of the way and she gets agitated when I try to get her to go to our car.
        <li>d. She shows an amazing ability to run quite quickly as she makes a break for it.
        <li>e. Cracker Barrel management comes outside to ask if we need help. </ul></ol>
G. Back in the car.  No more stopping until we get home!
H. Home.
    <ol><li>Nice dinner
    <li>She agrees to sleep in Nathan's room downstairs after a brief crying jag upon seeing that the room she lived in last year is now the boys' room.
    <li>2 am: She wakes up to use the bathroom, but goes right back to sleep
    <li>3 am: Nathan wakes up hungry. Rare these days, but he's had a long couple days too.
    <li>5 am: Nathan wakes up again crying.  When I get him, she's gone....up at the top of the stairs, trapped by the baby gate. Good Morning everyone.</ol>
I. Monday: She reluctantly accompanies me to <a href="http://www.delmargardens.com/dgchesterfield/">the nursing home we've picked out</a>. 
   <ol><li>I had to hold it together when they couldn't accept the THREE MONTHS worth of medication that I'd just refilled (Anyone want some cheap Xanax?)
<li>She does seem responsive to the caretakers.
   <li>Very subdued mood, lots of crying.
   <li>Complains about the color sceme.
       <ul><li>a. "These are NOT good colors for me."
       <li>b. Hot pink and signal orange?  I think she's justified in this.
       <li>c. At least her room is a soft teal, definitely a good color for her.</ul>
   <li>4. Repeatedly asks, "Why are you doing this to me?"
   <li>5. Not pleased with the idea of having a roommate
       <ul><li>a. 103-year-old
      <li> b. crotchety 
       <li>c. snores
       <li>d. leaves poop smeared on the toilet seat</ul></ol>
J. In lieu of cleaning up roommate's feces, we are directed to the bathroom by the reception desk.
   <ol><li>Toilet seat hinge is broken.
   <li>Seat slides off to the side when she attempts to sit.
   <li>Hard tumble to the floor, resulting in a bruise to her forehead.
   <li>Ambulance ride to the hospital emergency room for a CAT Scan.
   <li>Results are completely normal. As expected. The whole ordeal was really to satisfy Delmar Gardens' liability concerns.
   <li>Four hours later we return to the facility.</ol>
K. Nice relaxed bedtime after a quiet day adjusting to the new surroundings. Not.
    <ol><li>"PLEASE let me go home with you."
    <li>Super friendly nurse aide who tries to rush mom into pajamas and into bed.  Doesn't work.
    <li>Snoring roommate
    <li>LOUD nurses hollering back and forth in the hallway
    <li>Crying jag over forgotten toothbrush (that it turns out was in the suitcase all along)</ol>
L. Home.
M. Tuesday am: Back to Autumn View Gardens to pick up most of the belongings we left there.
     <ol><li>I allow myself some snarkiness when a couple residents who were not nice to my mom ask, "Where's that CUTE baby?"  I tell them that they'll never see him again. "Oh, give him a kiss for me." I don't think so.  He has no idea who you are.
     <li>A housekeeper expresses interest in buying some of the furniture.  I guess that's a good thing. (Anyone want a cheap loveseat?)</ol>

It's 11:30. If there's any hope of me getting to work on time tomorrow, I need to get to bed an hour ago.




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         <link>http://www.running-blogs.com/chelle/2012/06/the_mother_chronicles.html</link>
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         <pubDate>Tue, 12 Jun 2012 23:31:01 -0500</pubDate>
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         <title>Havoc</title>
         <description><![CDATA[In an ideal world I'd update promptly following one of our travel adventures, but as it is I'll try and recall things as best I can.

I got to Autumn View Gardens with plenty of time to pick up my mom for our trip to Ohio.  I'd packed up all of my mom's cold-weather clothes and left just one outfit in the closet for her to wear.  So I wasn't thrilled when I saw that somehow the aide had pulled an outfit out of the box of winter clothes. But whatever, not a big deal.  So just a quick bathroom trip and we'd be off.  Unfortunately, she was completely soiled and required another outfit change and a major clean up.  By the time we finally made it out to the car, we really had to hustle to make the flight.

When we got to the airport, we were still okay...until we realized we'd left Nathan's car seat in the car and then my mom decided that she was NOT going and refused to budge another step.  It's funny though, no matter how crazy things got, I never really felt overwhelmed by any of it. I mean, when the worst thing has already happened, nothing else really seems like that big a deal.

And besides that, it always amazes me how helpful everyone is to me when I'm traveling with my entourage. TSA didn't make me unstrap Nathan from his Ergo baby backpack when we went through security and both he and my mom were able to keep their shoes on.  Apparently the latest regulations say that passengers under 12 and over 75 don't have to take their shoes off.  I told them that I appreciated that, but that my mom was only 64 and they just waved me off with a pointed, "she's fine." 

The important thing was, we did make the flight, even if it was just barely!

Nathan was a champ on both flights and I didn't even have to break out the baby Benedryl. I wish I could say the same for myself, as I got smacked with a bout of airsickness and Delta had NOT provided either me or my unfortunate seatmate with courtesy bags. I was able to threaten Nathan for the rest of the day, "If you keep acting up, I will barf on you....and you know I will!"

Upon arrival I rented an overpriced luggage cart for the first time in my life to get all of our stuff to the car rental (totally worth it).  It turned out that I had not printed out a required voucher for the car rental and was going to be charged an extra $80ish for I'm not sure what exactly, but I allowed myself the luxury of a few tears at this point and the problem magically went away. 

Finally, we got to my grandmother's and started the process of settling in there.  My grandma already has 24-hour nursing care, so the plan was to add a second caregiver to the daytime routine from 10 am - 8 pm and have both the ladies sleep in improvised bedrooms downstairs.

Issue #1 came when my mom had trouble staying asleep in the family room.  The light from the kitchen (where the overnight caretaker sits) may have been the problem or the noises made by my grandmother's dog or just the novelty of the situation and the unfamiliarity of the caregiver...whatever it was, the young woman was coming upstairs every half an hour or so to let me know my mom was awake again and very agitated.  I'd sit with her for a bit, get her calmed down and then head back upstairs to try and get some sleep.  Of course, come morning, her memory of the situation was that I had kept coming down to wake her up!  Somewhere in the wee hours I finally brought her upstairs to sleep in the room she usually does when we're there.

I remember thinking that night that this solution was just not going to work and regretting that I'd allowed myself to be talked into dragging my mom all the way out there. I wanted to be optimistic, but I just couldn't imagine leaving her with strangers every night when she is so fearful and anxious.

The next day must have seemed terribly confusing to her, what with the sketchy sleep, two new caretakers, her sister, mother and daughter, three dogs and Nathan running around. Heck, I was feeling a little overstimulated by it all!
<img alt="ohio.jpg" src="http://www.running-blogs.com/chelle/ohio.jpg" width="450" height="284" />

It's getting a bit late here though, so I'll continue the narrative tomorrow...]]></description>
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         <pubDate>Wed, 06 Jun 2012 23:21:30 -0500</pubDate>
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         <title>Just when I think I&apos;m caught up...</title>
         <description>I can never get too comfortable with any situation lately, because it&apos;s almost inevitable that everything will turn on a dime. Turns out that my mom&apos;s new residence facility will not be ready to open at the beginning of June after all, and Autumn View Gardens - Ellisville (oh yes, I&apos;m spelling it out in full from now on to make sure it&apos;s Search Engine Optimized) is insisting that we will have to comply with the 30 day move-out request./

So, the options at that point were either to scramble to get into a skilled nursing facility, move her back in with us for a month or go to Ohio to stay with my grandmother.

I still feel like it&apos;s premature to go into the sterile environment of skilled nursing and a move back into our house -- full of summer-vacationing kids and absent me for 10 hours a day -- seems like it would be extremely disruptive to everyone.

So the current plan is for me to fly to Columbus with my mom and probably Nathan next Thursday.  My grandmother already has 24/7 nursing assistance in her home, so we&apos;ll add another person during the day to help with my mom.  Disappointingly, her long term care insurance only provides the barest pittance for home care, so it will be an expensive month or two, but it does allow 1. for her to spend a little more time with her mother while she&apos;s still with us and 2. for her sisters to see her, which it has been impossible for them to do while she&apos;s here in Missouri.

Suffice to say I am very, very conflicted about this next experiment.  Certainly, it will be nice to come home to uninterrupted evenings with Jack and Nathan for a bit, but I don&apos;t know what I&apos;m going to do the first time my mom is overwhelmed by anxiety and I&apos;m hundreds of miles away.
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         <link>http://www.running-blogs.com/chelle/2012/05/just_when_i_think_im_caught_up.html</link>
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         <pubDate>Sat, 26 May 2012 22:18:08 -0500</pubDate>
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         <title>Moving On</title>
         <description><![CDATA[I've let these updates go for so long now that I'm afraid all of the minor events will seem jumbled and confusing.  I'll try and just hit the major developments and make the last month or so come across as much more simpler than it has been in reality.

The psychiatrist that visits Autumn View suggested a while back that my mom might do better on this <a href="http://www.nuedexta.com/">new drug combo Neudexta</a> that is specific to the mood swings and crying/laughing jags that often accompany dementia. I agreed that it sounded promising, so he phased her off of the Lexapro and started a low dose of this new medicine.  

That's about the same time that she started to become a lot more agitated, angry and combative.  It might have been the change in meds, it might have been related to two new caregivers coming on staff, it's hard to know.  We tried the new medicine for another week or so to see if things would even out, but when things didn't improve and she started trying to leave the building, we reversed courses.

Things have sort of improved now from the worst of that, but my mom is still getting frustrated more easily than she used to and she doesn't have any constructive ways of venting those feelings.  She's raised her hand to strike both me and one of the caretakers she really likes and regularly shoves the ones she doesn't like so much when they try to assist her with dressing, toileting, etc. I'm also unhappy with the level of care, some of what my mom needs these days is not really included in the official definition of assisted living, so there's only so much I can do in terms of complaining.  She still tries to leave on occasion and tells people that she needs to get out of there and can theygive her a ride.  She has to wear a 'wander-guard' anklet that sets off an alarm if she goes out a door and she HATES that.

And then at the end of April, Autumn View informed me that they will no longer be able to take care of her and gave us 30 days to find another living situation.  They suggested three skilled nursing facilities that have memory care units and will accept Medicaid, but I find all of them depressing and most are not very conveniently located. I found another one that both she and I liked, but just found out today that her "elopement" issues (I love that's what they call it when you try and leave) disqualify her from residence there. 

I think I'm pretty settled on us trying a new private pay assisted living residence with a memory care unit that's fairly close to us that will open June 1. We'll still have to make another move when it comes time to apply for Medicaid, but we'll cross that bridge when we come to it.

We had another rough day today and I finally figured out that my mom was not put back on Lexapro after that whole medication debacle.  No wonder she's still dealing with extreme issues of anxiety and tearfulness...she's no longer getting any pharmaceutical help at all in that department!  So I'm going to see if I have any leftover meds that I can start her back on tomorrow (just call me Dr. Peltier) and I'll call the doctor on Monday to insist on official documentation for that move.  

Really kind of pisses me off and makes me get all conspiracy theorist on this since my mom's anxiety-fueled behavior gives Autumn View justification for kicking us out, whereas before, she was just a lot of extra work. And even on that, I sometimes feel like the aides wait until later than necessary to help her get ready for bed since they know that if they wait long enough, I'll just do it for them.  

That was me venting.

In the interest of balance, I'll try to end on a happier note. I don't know if it's true empathy or just imitated behavior, but when Nathan saw his grandma crying today he watched thoughtfully for a minute, then went off towards the back of her apartment.  He came back with tissue paper to dry her tears, as he'd seen me do, but his was still attached to the roll in the bathroom and trailing along behind him.  It was a sweet gesture though and it did make her laugh.

Also, my dad will be coming in for a visit on Tuesday, so he'll be able to spend some time visiting with her during the week, so it will be nice to have that extra support.  Now I just need to a crazy amount of last minute cleaning...off to start that right now.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/05/moving_on.html</link>
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                  <category domain="http://www.sixapart.com/ns/types#tag">assisted living</category>
                  <category domain="http://www.sixapart.com/ns/types#tag">dementia</category>
                  <category domain="http://www.sixapart.com/ns/types#tag">ms</category>
                  <category domain="http://www.sixapart.com/ns/types#tag">sandwich generation</category>
        
         <pubDate>Fri, 11 May 2012 23:43:29 -0500</pubDate>
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         <title>Spring</title>
         <description><![CDATA[Funny how much of a blur the last month is now that I'm trying to sit down and reflect/report on it. Surely <i>something</i> notable happened...
<img alt="avg-1.jpg" src="http://www.running-blogs.com/chelle/avg-1.jpg" width="400" height="261" />
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!
<img alt="avgeaster-1.jpg" src="http://www.running-blogs.com/chelle/avgeaster-1.jpg" width="400" height="256" />
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.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/03/spring.html</link>
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         <pubDate>Wed, 28 Mar 2012 23:35:22 -0500</pubDate>
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         <title>No Comments</title>
         <description><![CDATA[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 <i>hundreds</i> 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 <i>when</i> 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.]]></description>
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         <pubDate>Mon, 05 Mar 2012 22:58:15 -0500</pubDate>
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         <title>Channeling Ferris Beuller</title>
         <description><![CDATA[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.
  
<table><td><img alt="arch.jpg" src="http://www.running-blogs.com/chelle/arch.jpg" width="200" height="301" /></td><td>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.</td></table>
Since we were so close to SLU at that point, I stopped by work and immediately got sucked into a video project.  They needed me to interview the customers & proprietors of some of the lunchtime food trucks that frequent the campus library and it seemed like I could get away with doing that with Nathan in tow.  It was a little dicey by the end and I haven't gotten around to actually looking at the footage yet, but I think it turned out okay.  The toddler slept long enough for me to get through an alumni magazine graphics meeting and then it was off to the zoo.

<img alt="goat.jpg" src="http://www.running-blogs.com/chelle/goat.jpg" width="350" height="233" />
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.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/02/channeling_ferris_beuller_1.html</link>
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         <pubDate>Fri, 24 Feb 2012 23:29:11 -0500</pubDate>
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         <title>The New Room</title>
         <description><![CDATA[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.  
<img alt="1.jpg" src="http://www.running-blogs.com/chelle/1.jpg" width="400" height="300" />
<img alt="2.jpg" src="http://www.running-blogs.com/chelle/2.jpg" width="400" height="300" />
<img alt="3.jpg" src="http://www.running-blogs.com/chelle/3.jpg" width="400" height="300" />
<img alt="4.jpg" src="http://www.running-blogs.com/chelle/4.jpg" width="400" height="300" />

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.]]></description>
         <link>http://www.running-blogs.com/chelle/2012/02/the_new_room_1.html</link>
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         <pubDate>Fri, 17 Feb 2012 17:44:03 -0500</pubDate>
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