Holiday Prep

I'm home for Thanksgiving. And the first thing I would like to say is...really, who was the genius that decided to settle in Chicago? This weather is the pits. The only thing that makes up for it is the wide-eyed look my mom gave me when she heard my voice.

Meanwhile, on to all things Pam. She's still improving. It's incremental. So incremental that it's only noticeable to those who don't see her every day. Me. Things like her ability to sit up, lean forward and untie her shoes. Last time I was here she was still having trouble even aligning herself. But I know for Dee and dad it doesn't seem as profound.

I did her nails yesterday while my dad read all of us the New York Times wedding announcements. She threatened to bite anyone who made her tried to make her do exercises outside of the scheduled times. She made good on that threat, but luckily dad's reflexes are in good shape.

And lastly, she'll be coming home for Thanksgiving. Yes, it's exciting, but honestly, we're terrified. Seeing her at home, seeing the very real and very harsh contrast of who she is now versus who she was 4 months ago...it's going to be impossible. And then what happens when we have to tell her she has to go back? How do we tell her that she can't stay? But before I can worry about that though, I can't forget to order the shrimp or she'll have my head.

If you have a minute...

Happy Monday everyone.

Instead of me trying to relay the mundane details of mom's progress, I thought I'd let you just read the notes from someone who is great with the mundane....the insurance case manager. So here it is, straight from the insurance horse's mouth.

"Pam continues to make progress, although it fluctuates depending on her endurance that day.  Rebecca, an OT was on vacation for 2 weeks and noticed an obvious improvement in gait distance and independence.  Pam was dependent with dressing, bathing, toileting and is now max assist. That may not sound significant, but it is progress, and it all adds up over time.
 
Her ability to follow directions has improved as has her head control and self care skills. Pam's left shoulder pain is limiting, but she has increased tone. She's able to maintain sitting balance unsupported for an hour during therapy, which is much improved functional endurance.  She has improved in problem-solving and has reduced pushing toward her right side.
 
Therapists say she has had a good response to therapy overall.  Again, because Pam was so ill initially, her recovery will take longer.  Dr. Eliades feels she will continue to progress."

On another note, I just want to give a shout out to my dad and my aunt. I feel like I've stolen a bit of the spotlight (naturally), but they are truly the heroes. Showing up every single day - literally and figuratively. It's draining. It's all consuming. It's a Groundhog's Day experience except without Bill Murray and constant hilarity. I honestly don't know how they do it. It's a testament to both of their spirits and love for my mom. Many of you have sent me notes of encouragement and love, and those do not fall on deaf ears. So if you have a minute, I would just ask for this quick favor, give them the same love and energy that you have been kind enough to give me.

Dee: deehouston@fuse.net
Dad: stanleimer@sbcglobal.net

Warning to the universe

She's doing fine. Still making small progress, but it's progress. When will she be able to come home? No idea. It will probably still be quite a while. There is a chance that we may be able to bring her to the house for Thanksgiving, but the chance is microscopic, so don't want to get too excited. She did get her hair done! The hair angel (the woman who does her hair) came and made her beautiful out of the kindness of her heart. Didn't charge a cent, which is why I call her the hair angel. Personally I thought the grey was rather fetching, but Pam wasn't feeling it and as we all know, if Pam doesn't like it then it gets changed. The city of Evanston's landscaping department has learned that lesson the hard way. Let's just say she should add "volunteer midnight gardner" to her resume.

In the meantime, we're all just plugging along. Trying to adjust to the new normal. It's not easy. Frankly, I'm pretty pissed at the universe. Hey universe, you're on my shit list. You've been warned. Is this some cruel joke at my expense?

Mostly though, I'm just lost. Trying to look for a lesson. That's all you can do in this kind of shitty situation, right? Figure out how to adapt and how to learn something, anything, just so at the very least this experience doesn't completely take me down.

So far, this is what I've got:
1. Somewhere there's a lesson in all of this
2. No, not everything happens for a reason

I'll keep looking.

Love each and every one of you. Thank you for being a constant force. My promise to you all is that I will continue to fight as hard as she is and continue to become the human I know my mom expects from me. Until then, bare with me.

The Harsh Reality

So, first of all, the update with mom is that she's doing incrementally better every day. She continues to attempt walking every day. She continues to re-learn how to read left to right. She continues to regain her center and learn to balance. The truth is that she will most likely be in Westminster Place for a least a few months until she gains enough capability to be at home. Again. There is path with no map and no defined destination.

And secondly, I want to acknowledge the fact that I haven't written in a while. In general, I want you to know that the rule of thumb is "no news is good news". The reason I haven't written is that frankly I'm just not ok and it's hard to write when you're not ok. Three months ago my mom almost died. The person who is supposed to always be there to fix things, tell me it's going to be ok - that person almost stopped existing. Since then, I've kept myself together (for the most part). I've watched her come back from the brink, open her eyes, speak, try to walk while I also continue to be a daughter, a niece, a wife, a friend and an employee. Have you ever had your mom look into your eyes, cry and apologize for living? Apologize to you for "being a burden"? Because I have. It kicked me right in the gut and I realized I've been holding my breath. I know I need to start living again, not just for me, but for her. But as I start to live and breathe again a very harsh reality is setting in. Here's the truth, my mom is a different mom than she used to be. Which means I have to be a different daughter and a different person than I used to be.

I am overwhelmed.
I am an open wound.
I am always seconds away from tears.

I don't mean to be dramatic, but I DO want to try to help you all understand how very real this pain is to me, to my dad, to Dee, to Rick, to Patty and so on. And in order to exist with this kind of pain, we have to change, we have to be different than we used to be. I can't say enough how much every single one of us appreciates the love and support. But for now, we're in survival mode along with my mom and just trying to rebuild.

The Ghost of Puck

I decided to make a last minute trip to Chicago for Columbus Day. So I'm sitting here at Westminster Place, watching her sleep and enjoying her cable television. Dee and I spent all day yesterday here so she could teach me the ropes. I learned the art of menu ordering for the week...she's sick of eggs (you have to remind her of that), make sure to order the sugar substitute so she can put it on her Rice Krispies, if dinner options look questionable there's the back-up menu of grilled cheese or a hamburger or spaghetti. I learned about speech therapy exercises....push the tongue depressor with your tongue, bite you tongue and swallow, and make sure to use the straw during reading practice because the kindle is a touch screen. I know where the stash of cranberry juice is and I know that sometimes they sneak meds in it, so never accidentally sip the cranberry juice, you never know what it's spiked with.

I also met the PT, Suzanne, she can't be more than 5 feet tall, but she's all business and has mom practicing walking. Then there's Rebecca from St Louis. She's the OT. Young, super friendly and I can tell she loves mom because she banters with her and when mom threatens to slap her for stretching her left wrist too far Rebecca doesn't flinch and simply says "thanks for warning me". Then there's John. He's a young assistant who just graduated from University of Illinois. He's mom's favorite. He laughs a lot, talks to her constantly and takes all of the shit she gives him for moving back in with his mom. All in all, you can tell mom has charmed the folks around here. What a surprise.

As far as how she's doing, her vision has improved a lot with the new prism glasses. She makes eye contact when she talks to you now and her reading is getting better every day. Physically, she's still trying to work on walking. The PT says that she can feel mom trying to activate her left quad, which is great because that means that the connection is there, but she still needs full support when trying to walk. Mentally, she's pretty with it most of the time. Her wit is here, most of the time her memory is here, she can explain the biology of white blood cells, she can deduce the definition of word by it's Latin roots, but sometimes when she gets tired she starts to hallucinate a bit. Yesterday it was about a little white dog and chipmunks. It's just part of the brain injury and she's with it enough that you can tell her it's an hallucination, but of course we both are wondering if Puck has come back to haunt us.

A 3-star Review

I feel as though we'd give the first week at Westminster Place 3 stars. Here's the challenge, these places are used to working with older folks. I don't want to sound ageist. I think older folks are pretty badass having made it through so much life and then have to put up with seeing folks like Gwyneth Paltrow trying to teach life lessons. I'd like to hear a panel of early birders discuss the Gwyneth.

Anyhow. I digress. My original point is that these places are used to older folks who aren't necessarily as physically capable as someone like my mom is...or should be rather. So the PT is not up to snuff. Let's expand on that, shall we? By "not up to snuff" I mean that at RIC they had her up and walking, climbing stairs, doing enough that it really pissed her off. At Westminster she practices sitting up and getting dressed. Really? I mean, come on. I know that everyone told us that RIC was very intense and that everywhere else would feel like "less than" but the reality is that there is risk of regression.

I don't mean to totally poo poo Westminster. All of the folks who work with her are attentive, compassionate, positive and overall perfectly lovely. But the truth is that this isn't a longterm plan for her. This is meant to be the place where she gets strong enough to come home. I assure you that Dad and Dee are working on it. They're launching a full court press because as of now unless we plan on leaving her at home sitting up and dressed then something has got to change.

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.