How we are.

My mom is leaving RIC today. She's moving to Presbyterian Homes, Westminster Place in Evanston. After many different tours to many different types of places, this one won over the rest. It might not be the most swank accommodations, but both my dad and Dee felt as though the level of care is the best and that all of the residents seemed happy. It also happens to be fairly close to home so my dad will be able to spend a good amount of time there, which I'm sure will not only make my mom happy, but also my dad.

Many of you have asked how my dad is doing. Well, he's beyond the need to be checked into the ER for panic attacks, so he's got that going for him. But as many of you can attest to, my mom is quite a life force and that force has been in jeopardy for the last 2 months - he's faced with that every single day. Grief is an interesting thing. Entirely unpredictable. First off, you never know how you're going to grieve, but I can assure you that it's not like you think you would. There are lots of moments of grief and from my experience and my dad's experience I can say that the moments change quickly and often. Obviously, there's sadness - those moments when you remember that she's still a stroke victim and this road is undefined and never ending. And sure you can say "but at least," but that phrase means nothing when you're not in a moment of hope. And hope-moments become fewer and farther between. Not because things aren't going well, but because as things get better it becomes more and more obvious that things will never be the same. Seems cruel really, doesn't it? And then there's straight up stroke rage. It's a term coined by my absolutely amazing boss. Her husband was diagnosed with Stage IV neck cancer years ago and after quite the struggle he made it through. It's a heroing story that I will never be able to do justice to, but one of the results is something she calls her "cancer rage". It's the anger you feel when you just can't cope with it anymore. When you're just over it. When you've had enough of life being so damn unfair. It's when you've worn out every other coping mechanism that is getting you through the day and all you have left is straight up rage. I'm not sure which thing my dad is feeling at this exact moment, but I assure you it's one of those.

I know many of you struggle for what to say or what to do. Trust me, so do I. Unfortunately, as far as I know there isn't really a right thing. I thought a lot about this post before writing it. I'm not writing this to make anyone feel badly about asking "how are you". I'm thankful that you ask and that you care. I don't think any of us could get through this without knowing there were so many people who are out there just trying to help. I'm writing this to answer your question in the most honest way possible, because the truth is that we're not OK, we just are.

I don't really have any other info about Westminster yet. It's another Blue Cross Blue Shield situation meaning that every week they reassess and send to insurance. Then we cross our fingers that she gets to stay a bit longer and continues to get better.

Happy Birthday To Life's Tour Guide

Today is her birthday. She's never been a huge birthday person. I think it's because she sees it as a day that reminds her she's getting older. I mean, none of us like to think about that...well maybe if you're a little girl waiting to get boobs or something. Anyhow, I feel the same way about birthdays and I always have. I truly believe Peter Pan had it right and growing up is the pits. BUT the last two months have really slapped me around and made me reconsider a few things. Yes, I still side with Peter Pan, but since living on a magical island where time doesn't exist isn't an option, I have to face the nemesis of time. I've made the decision that from now on I will see my birthday as a personal thanksgiving. Not in the historically inaccurate way or a day to watch football (*shudder*), but in the "take a minute (after you gorge yourself on delicious food) and think about how awesome life is" way. I will not wax poetic about the beauty of life. I hope each of you knows why your life is beautiful. If you don't, please do me a small favor and take an inventory. And remember "quality over quantity".

SO, thanks to Carolyn, she celebrated yesterday with some of Cincinnati's finest exported goods, Graeters ice cream and Opera Cream Cake from The Bonbonerie. If those two things don't remind one how awesome life is then you might just be hopeless. I'm sure she's celebrating today by doing PT with Heather and OT with Michelle. Hopefully she's wowing them so that this week's assessment also wows Blue Cross Blue Shield and she remains a resident at RIC for another week. If she gets the boot, she will go to one of the many skilled nursing facilities that dad and Dee have been touring.

But that's tomorrow! Today is life-inventory-taking day. The day my mom gets to celebrate life and I celebrate another day guided by Pam on the "how to kick ass at living" tour of life. Thanks mom. I love you.

Notes from the front lines

When I left my mom yesterday she was asleep. It was probably a good thing, otherwise I would've had to look into her eyes and say goodbye. It was amazing to see her progress last week and get to know the incredible staff. By the time I left I was buddies with several of the nurses, the PT (Heather, who mom swears is crazy for "hallucinating" that mom can walk), the OT (Michelle, who mom has given our family's full history to...you know what I mean), the speech therapist (Val, who reported mom was "in a mood" yesterday with a supportive pat on the back) and last but certainly not least the fantastic receptionist. Her name is Deborah and LOVES Stan, because who doesn't. She sits at the front desk and laughs and chats with everyone who walks by. The woman is an angel. Of course, mom doesn't believe that she's making progress, but everyone around her repeatedly reminds her how far she's come. Yesterday she walked with a cane and also climbed stairs. She needs full support on both sides when she does it, but she still does it. And then of course she bitches about it, apologizes to "these poor people for breaking their backs" (which they all scoff at), swears she's going to quit PT all together and then keep on trucking. Her left leg continues to make a little more headway every day and she also is getting more rotation in her neck.

Dad, DM and I started surveying skilled nursing facilities as well. We visited Glenview Terrace and Whitehall (the Disney World of skilled nursing). Both were great, packed with supportive staff, friendly folks and each providing exciting things such as aviaries and ice cream parlors. Here's the catch though, both of those are fairly far from our family nest in Evanston, not to mention epic journeys from downtown where my dad would be coming from after a full day of work. So we need to rethink our search. The place needs to be downtown or closer to home and has to come with incredible post-stroke rehab. You would think that's any easy thing to figure out given the world wide web, but it's much harder than a simple search. As far as we know we have a week to figure it out as she's still supposed to move on September 21st - the day before her birthday. As soon as we figure out what her next residence will be I'll let you all know because I expect a few of you may want to send her some seriously deserved birthday cards.

Oh Frances.

She has a neighbor named Frances who tries to escape daily. She starts with asking everyone she walks by if they can give her a ride. Wait, she's walking around? Yes, with a nurse. They try to keep her busy. This results in her explaining to anyone who will listen how "terrible" this is. It's nowhere near terrible. The entire staff says hello to her every time they see her and patiently explains that they can't take her home. One extra smooth nurse explained that he had taken the bus today, so he couldn't. When he walked by me he just said "I don't want to hurt her feelings". She asked me the other day if I was a nurse and when I said no, she just moved on. To Frances, I'm just chopped liver. Mom doesn't seem that bothered by Frances, although sometimes she expresses her desire to "help" Frances. Seriously though, the staff is a bunch of saints. They're patience and compassion is admirable.

Meanwhile, mom is continuing to work her tiny ass off. I missed her PT session yesterday with Heather, but apparently she was walking on the treadmill. To be clear, she's in a harness, but the plan is to help her learn to move her legs in a walking rhythm. Side note on the PT's - they're all these tiny girls (I say girls, but they're probably late twenties) and each of them seems to have super human strength and unwavering optimism. Again, these people continue to blow me away. Anyhow. She's still working on getting that left leg in walking form. Every day she makes a little more progress even though every night she says she's swearing off the PT. She also seems to be a getting some control over her left arm. Yesterday the OT - Michelle who is also amazing - she put mom's left arm in a sling that hangs from the ceiling and told her to pull her arm towards her right arm. And she did. Hello left bicep! Nice to see you!

Last bit of news, she's almost definitely leaving RIC on September 21st. This is pretty normal - most patients at RIC only stay 2 weeks, so the fact that she got 3 weeks is awesome. Where to next? I have no idea yet. We have to choose a skilled nursing facility, which is overwhelming and totally daunting. I've started making headway with the different therapists to try to get their opinions. They've all given me things to ask and look for. That being said, we have no idea which place is "the best" which is obviously what we want. If only The Ritz had a rehab center.

Notes from Rehab

I've been here about 3.5 days. I get up in the morning, do a little work, pack up my computer, head down to RIC, talk to her, help her through therapy, do some more work, talk to her, help her through therapy and so on. Dad usually shows up in the afternoon and immediately she likes to tell everyone that "the cleaner" is here. Hey, if he's going to have a reputation, I don't think being notorious for his cleaning skills is a bad one.

Some of her days start as early as 8am. There's a lot of OT and PT throughout the day. Both of which she says she's "sworn off" because they hurt too much, but then in usual mom fashion, after she's done giving everyone attitude she does it anyway. She's just making sure they know who's boss. I'm pretty sure it's clear.

Therapy wears her out completely and she gets frustrated with herself. "I keep telling my leg to move and it just doesn't do it." Cue some tears...from both of us. Then cue a small pep talk - starting with sincerity and ending with laughter. Then cue a steely reserve, Pam-level determination, and a second try. To be honest, the left leg does "move", but it's only a little right now. Essentially, you can see that her brain is sending the message to it. As you all know though, our family doesn't do "patience" so she would like to be running a marathon, like NOW. However, it's going to take a bit more time than 3 days. I've got pep talk storage.

Then her days end around 3:30 or 4. The three of us hang out, have dinner, she threatens to bite anyone who gets in the way of her cake...you know, usual family time.

I tried to sneak an Apple TV in yesterday so that she could see the slideshow on her TV. Dad stood on a chair and hooked it up while I watched for invaders. Unfortunately they must have prepared for such rebellious behavior because they have disabled the TV from changing inputs. "I would've gotten away with it, if it weren't for you meddling kids!" (Scooby Doo reference anyone?)

On the move.

I just watched my mom walk. I swear. She was holding onto the rail on her right side and the PT was holding her left side, but she did it! She moved her left leg and took step after step. Naturally I burst into tears. And then they told her I was watching and she burst into tears and then we both just sat there and ugly-cried at each other. And then I told everyone in the office and we all cried together. I still have a lump in my throat. I also promised her I would dance when I get there tomorrow...that won't be embarrassing AT ALL. But if that's what Pam wants, then that's what Pam gets.

After we both got ourselves under control, she requested Don Marshall's presence as she needs a haircut. I believe the phrase was "I'm gunning for him." I'm not sure whether to laugh or be scared. :)

Post Labor Day Update

I'm back from Labor Day. Not that you asked, but it was lovely. I spent 4 days with several good friends of mine who made me laugh (laugh really hard) and feel lighter than usual. For that I am thankful. I also came back with a nice glow from time in the sun. Nothing as fabulous as my mom's tan, but still...

Now, for mom. She's still kicking ass. Supposedly the "team" was to meet today and figure out a plan. We're not sure if that happened or not. My dad was planning to be a part of it and then of course conference Dee and I in since we can't not be involved, but he never heard from them. Kind of annoying and pretty disappointing because we all have lots of questions, but I'm not going to hate on the folks at RIC because as far as I can tell they're working magic on my mom. She's actually eating! All kinds of exciting things too. Muffin. Mashed potatoes. You know, all of the things she would secretly want to order off a menu, but would instead opt for a coffee or "rabbit food" (aka, salad). In fact, she ate enough yesterday that they didn't even have to supplement her nutrition with the feeding tube.

Other than that, dad says she's been working hard. Are any of us surprised? She's in some sort of therapy from 8am to 3pm with a small break. That's a full day for any of us, so you can imagine that she's pretty tired by the end of the day.

Lastly. As far as the three weeks, they've extended that date to September 21st. So another extra week...as of now. This whole thing is pretty confusing (and vague because it's insurance and doctors so are we surprised?). I'll try to explain, so bare with me. Apparently the way it works is that Blue Cross Blue Shield has to approve it by week, so every week they have to clear her to stay. And the way they determine if she "qualifies" to stay at RIC is by how much progress she is making. The more substantial progress she makes, the more likely they are to allow her to stay - essentially, the more RIC seems to help, the more they support the stay. I wish I knew anything more than that, but that's all I've got. When she does eventually leave RIC, she will either go to another place with constant nursing care OR go home and attend out patient therapy, but let's not cross that overwhelming bridge until we get to it, shall we?