No Plan

 I am a planner; an organizer.  I like to know the who, what where, why and how of EVERYTHING.  Or at least as it pertains to me.  (As much as I would like to, I cannot control the world.)  Which is why it is so difficult for me to have no plan; to NOT have answers.  Especially when people ask me about my father.  How is he doing?  When will he be coming home?  I have no answers.  Even if I did, my response would change week by week, day by day or even hour by hour.

If we go back to early spring, I thought once my dad was released from the hospital, that he would be in a rehabilitation facility for a couple of weeks.  I didn't expect it to all go smoothly.  (Maybe I did?)  I definitely didn't expect the roller coaster ride that we've been on.

When I, along with my husband, went to visit him in the rehabilitation center in late March, things were not good.  (  He was so out of it and so unwell, I didn't want to leave him.  (Nor did I want to stay.)  I thought he was on a downhill slide so bad that this was it.

Obviously, it wasn't.  Week after week I went to see him.  I thought he was getting better.  He seemed to be more of his "normal" self. (That is to say that he was grumpy.)  I, with the help of his caregiver (who still lives in the house and goes over to the facility every day to feed him and help with his general care) trimmed his hair.  (Surprisingly it didn't turn out too badly).  It SEEMED as if we were going down one path, although I was disappointed that they weren't really doing any physical/occupational therapy with him.  (I knew he wouldn't be able to walk, even with assistance, but I thought there would have been something...)  They said he was resistant.  I'm sure he was.  I told him he had to try, but I don't know if they ever really were able to do anything.  By the time early May rolled around and I asked the facility administration when they might be releasing him, I got the news that he would still need to be there for another month or two.  Definitely NOT my plan.

Then he ended back in the hospital.  Again, not my plan.  He didn't want to go back to the rehabilitation facility.  I didn't blame him.  I spoke with a palliative care nurse, and we thought, if possible, going home with regular (daily?) wound care visits and monthly palliative care visits might be the way to go.  She was the one who made it clear to me that his wounds will probably NEVER completely heal and that this cycle of hospital/home (or hospital/rehab/home) might just be reality.  It was difficult to take, but (sadly) made sense to me.

So it came as a complete surprise to me when over Memorial Day weekend, I was told that my father would be released from the hospital and to a new rehab facility.  (This one he had picked out.)  This was definitely NOT my plan.  I was told they were going to move him Friday night.  Friday night turned into Saturday morning.  (Hospital/medical transportation always seems to get delayed.)  My dad had been told he'd be staying for 5 days; by now I know 5 days means...well who knows?!

Today, marks 2 weeks since he was released from the hospital.  He's still in the new rehab facility.  When I talked to the nursing administrator there last week (or maybe it was the week before?  Should I be writing this all down? WHY don't I write everything down?), she thought at least 2-3 weeks.  (Translation:  at least a month; probably more.)

Last Saturday when I went to visit, he slept most of the time.  He'd been unable to use the phone to call me.  (Those annoying daily phone calls were actually missed.)  Again, not part of the plan.  Was this going to be the new reality?  That he was so medicated that he would not be very cognizant?  What kind of life was that?  I didn't plan for that.

I certainly didn't plan for the call I got last Sunday (  I didn't know what to expect today when I went to visit.  He had moved to a new room.  (I don't know if this was before or after the visit he had to the wound care doctor on Thursday...though why he went and what happened at the appointment I don't know.  His caregiver went with him and said that the doctor said the wounds were still quite severe going to be the new word of the year, along with overwhelmed?)  He was awake when I arrived and he seemed to be relatively "good."  (Although defining good is next to impossible.)

While I didn't mention my birthday this week, I told him I was staying overnight at the house.  I told him that tomorrow (Sunday) was June 11th and he DID know that it was his birthday.  He knew how old he was going to be. When I asked him what he wanted for this birthday, his response was typical, "to get the hell out of here."  I wish that was possible!  

Instead I offered a cupcake to celebrate.  He brightened at that; he wanted chocolate.  Then he said, he wanted the kind with a hole in it; so while he might not have had the exact words, I knew what he wanted is a chocolate donut.  (You know where I will be stopping tomorrow on my way to see him.)  

So, I guess my only plan is to keep going to see my dad and have no expectations.  When I am asked how my dad is doing, I'll have to say:  "I don't know.  Things change day by day.  There are good days and there are bad.  He plans to come home, but I don't know when and I don't know if that is possible.  When and if he is able to come home, I'll be sure to let you know.  In the meantime, the plan is to take and accept things day by day."

Day by day...with no plan.  That's how it's going to be.  I guess we all have to do our best to do just that.


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