To the Mall in Pajamas? I Don't Think So...

 Ugh, it is 3 am and your rattling around in the kitchen woke me.  I get up to ask what you are doing?  You said that you were cooking breakfast for our grandson, who is asleep in our bed.  We actually do have a grandson sleeping over with us tonight so that he can babysit G-mom on Saturday while I help his family move.   I take a look at the couch, which is the last place I saw him, and he is there sound asleep.  So I take over the cooking.  I know that you can make your own meal when you need to, but I just don't trust that you can manage the multi-tasking of cooking breakfast.  As three breakfast meals come together, you try to wake RyRy and all you are getting is groans.  Well, of course you are... most normal people are still asleep in the middle of the night!

 I have noticed that your voice has gotten weaker.  And when you go to clear your throat, you don't have enough muscle strength there to make it happen.  Another odd thing that I have noticed is that when you are standing, your knees are bent.  Maybe that is the way you balance yourself, as you shoulders are all hunched forward.  The ravages of this disease are marching on.  You have a very difficult time pulling your legs up into the bed and I usually have to assist.  Once they are in the bed, it is very hard for you to move that center of gravity away from the edge of the bed,  Those are some of the thorns, but there are some roses.  Your speech is still very articulate, despite some occasional word searching.  Your demeanor is still very calm and laid back.  

By way of explanation, Roses and Thorns is often a segment of our weekly caregiver's support group.  It is a way to talk about the things that went well or not so well during the past week.  I was very skeptical when I joined a year ago.  But it has been immensely valuable.  Each week is a little different in tone.  A couple weeks ago the entire hour was filled with laughter and last week was much more serious.  Each week brings a new tip or a coping mechanism that has worked for someone.  And occasionally it is peer support for someone that has had a very difficult week.  That support comes from a significant understanding of what you are experienceing.  Some have already been there and others have been preparing for a similar experience.  A decade or three ago, I would have said that this stuff is way to touchy-feely for me.  Today, I look forward to our Zoom every week.

You were a little disappointed with me yesterday.  During the day you were were chatting with Ally and Kendra, neither of which were actually here.  You asked if Ally could drive the Jeep because she was going to take you to the mall.  You sat on the recliner with your winter coat and hat and gloves on for over an hour.  I was busy doing something and my phone notified me that the front door had opened.  I jump up to find you headed outside.  I asked where you were going?  You replied that we were going to the mall.  I said that I wasn't really planning to go out in the cold and thought that Ally was going to take you out.  Begrudgingly, you returned to the warmth of the condo.  And just at that moment Courtney called to find out where we were going.  The opening of the front door had alarmed on her phone too.  

It was not until you hung up your coat and hat and and went to silently sulk on the recliner, that I noticed how you were dressed.  You were wearing sneakers with pajama bottoms and a night shirt with no underlying support.  That is a huge change.  You would never, ever go out of the house without being neatly dressed, in a fully pressed outfit, and all your makeup done properly.  To leave the house in that condition is just not you.  When RyRy and his mom showed up, you quickly forgot about how disappointed you were in not going to the mall.  

It is now almost 5 am.  You and RyRy are both back asleep.  Lucky you.  I have to meet his mom at UHaul in two hours.  No more sleep for me today.  It is frigid cold outside and we get to move from one apartment to another.  But at least I know there is someone here to help out and keep you out of trouble.  You can bet that I will check the cameras a few times during the day.   And I promise that I won't wash down too many donuts with all of that coffee.  Besides my cardiologist would not be happy about it.