Mike Day 66: What Is To Become Of Us?

April 25, 2011

Family, Health, Mike

Yesterday, again, was a day of many mixed blessings. 

Mikey visited Mike right after church.  When I arrived at the rehab about 10 he was already there and Mike was in OT.  Unfortunately, when I headed back to Mike’s room,  I was greeted with the news that he was in therapy, his son was there, and that he still hadn’t slept at night. He was restless and agitated. This makes for a sleepy patient during the day…and not always the most productive patient in therapy.  Still OT went well…by the time it was time to walk he was bushed.  He walked, but not as well as I would have liked.  Mikey left and we sat in his room and watched TV from the wheelchair.  At one point I asked if he knew who the big guy was who visited with the nice suit on…he looked at me like this was a why ask why question and said “Son” as he nodded his head.    

We popped Mike in bed about 12:30 because his butt hurt in the chair.  Mine would too.  He has a couple bedsores…some not so bad but one is stage 4 and very deep.  At 1 we popped him back out of bed for a round of PT with loads of stretching for flexibility.  We popped him back into bed for just a bit, he watched some TV as I sat next to the bed and dozed for about 10 minutes.  When he woke, it was evident he was confused…and he was trying to get out of bed between the lowest railing and the end of the bed.  He wanted out of bed.  I called for the nurses to help him get up and tried to soothe him so he wouldn’t land in a heap on the floor.  As I was trying to move his shoulders back into the bed, with my arms around them and bent over (I always forget the bed goes up and down!) the nurses arrived.  He got more agitated, grabbed the TV remote wire lying on the bed and hauled off and clocked me smack on top of the head with the remote.  (Yes, when they say did you see stars, you really do see stars if you whack your head hard enough!)  The nurse spoke sternly to him about his behavior and insisted he apologize and then got him out of bed. 

From there, in an effort to wear him out enough to sleep at night, he stayed out of bed, in the chair, until almost 9:30. To say that by dinnertime he was frantic would be a gross understatement.   He began to ask for his dad…dead for 16 years now.    He was very busy attempting to dismantle the chair.  He progressed to dragging the wheelchair around the room with his feet on the floor…did I mention the brake was on?…and over to the bed finally in an attempt to get into bed.  By 8:30 he was breathing heavily, soaking with perspiration, agitated beyond belief with frustration, furious with me because I wouldn’t help him.  I understood the reasons for trying to keep him up…but it was so hard to watch.  Going home to avoid watching it didn’t seem to be an option…who would be there to stay in the room to ensure he didn’t fall over face first with the wheelchair attached to him?  To make sure he didn’t open the seat belt, try to stand and fall and make his injuries worse, creating yet another setback?  Making it worse for me was the certainty he would have the mittens on to prevent pulling out his trach or peg and if he was put back into bed for safety, would be zipped into the “tent” as well.  Knowing all of that…and that he’d be there alone and confused, was, and  is far too much for me to bear. 

The nurse has tried to explain that he probably does not perceive it the same way that I do…but I doubt that.  I think he is in enough of his normal state of awareness most times that he views that precisely as I think he does….deserted, trapped where he doesn’t want to be and not understanding his limitations and why he needs to be there.   It’s really all more than I can bear.  This is very hard to watch.  My kids don’t quite understand.  They think I should just not be there so much and it will shape his behavior differently.  I am not so sure it will shape it in a good way.  Still, I don’t know if my being there really makes any difference at all at this stage in his recovery.  Where is that crystal ball when you need it?  Underlying all of what I can or can’t bear is the fact that Mike also has to bear the unbearable and is less able to comprehend it.

By the time I left at 9:30 he was sleeping soundly.  For how long, I don’t know.  I guess I’ll find out when I get there as it seems always to be the report of the day when I get in to any hospital.  I can only hope that he slept so he is able to work his tail off in therapy.  I have no idea what the insurance company will view progress or lack of progress…and what will make them decide that he is not making enough progress to warrant staying…and that he must go to a nursing home.  I know that the one I looked at would do their best, but they are not geared to helping this kind of patient. 

And, as much as I want Mike home…and fast…I fear bringing him home.  Will he continue to have these fits of anger that he is unable to manage?  Mike’s a huge guy and was very, very strong.  I would be no match.  Though debilitated, that strength is returning and I am becoming no match really fast.  I fear him at times when he is so confused and intent on doing what he wants whether in his best interests or not.  The therapists wonder if the house is set up for modified ambulation and wheelchair use.  I get the sense they are telling me that they suspect he will always require quite a bit of assistance with walking, with moving.  I don’t know how I’ll take care of him over the years.   I’ve heard that the VA is giving vets and their wives $X each month to pay for assisted living.  Do I sell the house and put us both in assisted living?  Would assisted living take Mike in the state he is in if it were not to improve?  Where would my kids live?  They are not in a position to move out given the vagaries of the economy.  There is so much uncertainty.  Our world is spinning out of control and that is definitely not a place I like to be.

As hard as it is to see this, I remain hopeful for a good outcome.  Hope is getting harder though.  Nobody can predict what to expect.  I have no peace of mind.   

Can I have a do over on this year?   Pretty Please?

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3 Comments on “Mike Day 66: What Is To Become Of Us?”

  1. Dawn Wigfall Says:

    Hi Robin…I hope it’s ok that I keep leaving you messages. I feel so close to what you are going through because of what my mom went through. I can tell you for sure that you are doing a great job being a loving and caring wife. There are so many that would not have the option to stay with him as much as you do. People are different I know my mon would have wanted me there with her all day every day because she was scared of being in an unfamiliar place by herself. She was also on a lot of medications for pain which made things worse. Best advise I can tell you us to be there as much as you can and until you see that moment in mike when he may want you to go or not spend so much time. These times are so crucial and really shape the “life story” you are blogging about what’s going on now through your eyes. When Mike gets ALL better because of your support for him, he will be able to tell his story. It’s so hard to see your loved ones in these ways it’s hard to keep 100% hope that things could go back. Like you said above you find yourself with all these plans that have to be made and questions and you can’t ask the one person who will be effected the most. I want to tell you that any thing and everything is possible just leave it to God and pray try not to worry. Also, take care of yourself so that you don’t burn out. From your description on Mike and what’s going on I think he loves you being there in spite of things that he is frustrated with…and the both of you will know when it’s time to take a break. If I do things differently for my mom when she was in this same place I would have done just the things you are doing now. :o)

    Reply

    • rsmallen Says:

      Dawn, thank you for commenting and for your love and prayers. Your mom and dad have raised a truly remarkable young woman. I know your mom is smiling!

      Reply

  2. Dawn Wigfall Says:

    Thank you Robin!

    Reply

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