I am tired

No one warned me that this was going to be exhausting.  No one said it would be easy but I was not warned how hard it was going to be.  Some days I feel so weak that I don't know where I will get the energy for one more need.  Tonight I had to do all kinds of things for this man that I love that I never imagined doing for anyone.  It is a hard job taking care of him and gets harder every day.  Honestly I am just done.  I feel overwhelmed and so tired that I can't see straight.  Yet I am sitting here at 1 in the morning because I can't sleep.  I have realized that being tired and being sleepy are two totally different things.  Tonight was just a really hard night.  As he called me over and over and over for more and more needs.  I was sitting in our bedroom and he was in our bathroom.  He has pulled things like this before but it has always been when he was scared and he was afraid he was going to die alone or he just wanted to know he was not in the house alone.  This time I think he just wanted to see how many times I would come to the bathroom.  He finally has decided that it is almost time to move him to the hospital bed.  He can tell that Jeff is doing all he can and it is just barely enough.  It won't be long before Jeff can't pick him up anymore.  Then he will be in the hospital bed.  We will have to once again rearrange the house so that he can have what he wants and needs near by.  Another thing I realized today that at least one of our grand daughters are scared of him.  She was playing tea party across the room from him and when I told her she could ask him she looked at me like a scared rabbit.  I even helped her so she would relax or at least I hoped so.  But no go.  It is something I will have to work on.  Because I can tell by his face that it hurts him when they are scared of him.  So lesson of the week, talk to every one explain what is going on and why and most important explain that they can't catch anything and it won't hurt them even though it is hurting him.  We don't learn a lot of new things anymore since he is probably at his worst or at least pretty darn close.  He can't use any of his muscles.  His bladder, lungs and now bowels  are either not working or pretty close to done.  His tongue doesn't work so his speech is awful.  He tries to talk in paragraphs and I may catch one word.  I try to pay attention to where he is looking so that I have a guess but it only works once in a blue moon.  Next lesson- get everything signed early because that is hard enough without you having to sign a DNR for him or filling out his advance directive that says no machines for him.  It feels like I am signing his death warrant but it is how he feels and by the time we got hospice he had already made these decisions just hadn't signed anything.  So get it signed!  That is it for tonight I am going to try to get some sleep.  He changed from his bi-pap back to his c-pap and is noisy again but he can sleep better.  No rest for the weary but there is for the sick and since it makes him happier that makes my life a little easier.