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Thursday, October 8, 2015

Even Less Sugar: Rehabulous

weaving cones in a walker. like a boss.
First week of rehab is in the can. 

It's quite an adjustment go to from the buzz of the ICU floor, with much staff and sterile and beeping and always poised for the next specialist's visit to a chill, quiet, open hallway, no monitors attached. It might seem like a big relief, but it takes (me) a few days to breathe easy and not worry that he's not receiving enough medical attention. 

He's close to home! Yay! That's a fantastic, fabulous thing. Except it does raise some questions and some guilt: how much time should I/do I need to spend at the hospital with him? He's working hard ... does he need/want a cheerleader in his therapy sessions? Shall I wait for him to be done and then come to see him? If I'm not here every day, does that mean I don't care? (obviously not, but that's where the guilt comes in). Does a "pop in" visit "count" or should I stay for a few hours? How often should I bring the kids in with me? 

I was disappointed two days ago ... I watched him struggle with his tremor. He was pale. He said nonsensical things... he was too tired mentally to converse in a "meaningful" way. He was very cold, in a very warm room, and several coughs led to a raging headache.

It was depressing. I couldn't bring myself to come in yesterday. 

I kept reminding myself: He did this before. He relearned to walk. At one point, he sat with drool hanging out of his mouth, unaware of it. This is not that. We'll get there ... Be patient.

rehab snuggles (it was PJ day at school)
Audrey makes eye contact. So feelings.













But then I'd think: Yes, but this time he's altered going into rehab. He's not 100% to start ... what is baseline now? Is "generally confused" going to be the way things are? Is he ever going to show interest or patience in the minutia of conversation? Have we transitioned from best friends to caregiver and patient?

What happens when he's released from rehab? That puts me back into nurse mode again. I am the one to determine "how he is" going forward. Pressure.

I spent most of a day arguing with myself, dealing with my own demons. 

Today I steeled myself to get over it and spend time with my partner, my friend, my love. 

I was rewarded with a More-Ian Ian. 

Yesterday I felt defeated and rotten. Today, we can do all things. 

It's different by the day, folks. This journey we're on ... it's a bumpy one. 

4 comments:

  1. Hi Rachel! Absolutely all of your points are valid. That's what makes them hard to made decisions about things. I can tell you that when my dad was in rehab every day, I went some days and some days I felt he was best alone with his rehab ladies. He, of course, had dementia, so was handicapped in that way. When I did go, I made it a point to be very casual about it, to get up and talk to others while he worked with is therapist.....he was a very gregarious person, so he could talk to anyone even during his ALZ years. Advice from me to you, if you want it, is go two days, stay away one, as far as the sessions go. Then question the therapist which way does he accomplish more....when you are there or not there. There will give you help. Given his circumstances, I would also say it's hard to pick a baseline just yet.....but they will figure it out pretty soon. You are so like me, you want to know just how it all works and you want to know now, and want to know what will be expected of you when he's done. Exactly the way I would be. I've learned from experience to adopt the "one day at a time" method......meet the day as it comes to you and put one foot in front of the other, and let your intuition tell you how to handle what comes to you. I'm so glad you had a glimpse of the more Ian-Ian. That's wonderful! I hope I haven't come off as telling you what to do.....it's more like what I would do, and if something helps you, fine. When it comes to time to release him and you're the nurse, I would have a big talk with whoever is running this show and have them lay out a plan for you....what should you expect, how much do you help him, push him, what should he try to do, should you be continuing therapy kinds of things with him, etc. Just a nice typed up sheet of paper that is your guide. And prayer. Lots and lots of prayer, and we are all still praying for you both. God bless! Becky

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  2. Looking great, Prayers coming your way.. God praise your amazing wife and family.. Jay, John, and I feel very blessed to be friends. MEAT LOAF and Horn Blower ready when you 4 are..Lord Jesus thank you for all.

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  3. Thank you Rachel for sharing your journey. It's never easy, but letting us know enables us to walk alongside you. You are in my prayers and the prayers of my Bible study group as well. May God continue to wrap his arms around you, comfort, and guide you even in the darkest hours. Praising God for those more Ian-Ian moments. Blessings, Susan

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  4. The way you write from your heart moves me every time, Rachel. I don't think there is a transition to caregiver/patient -- I think best friend says it all.
    What would you think about facetiming some days, or having a journal that goes back and forth from him to home? Kids could write notes and pictures, he could write back or have you write back? It's just a thought.

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