Sunday, June 28, 2015

Another weekend with ALS

It has been a really hard week as I have found most weeks are when your spouse is suffering from ALS.  I have to add in here that I would assume if your spouse was dying from anything it would be hard but ALS is all we know here.  So we had the hard appointment on Tuesday. Then Wednesday was hard until the evening when my newest granddaughter was born.  That made it a wonderful day.  Then Thursday came and we went off to see the dermatologist.  Dan's skin is drying out and falling off.  He says it is really itchy.  Since he can't move his hands he can't scratch it,  it is kinda driving him crazy! So we saw the doctor.  It took about 5 minutes.  It took us longer to get into the building from the parking lot than it did for the doctor to see us.  We were in and out before our appointment was supposed to start.  As we head home we hear that our new grandchild and our daughter who had her were both sick.  That really stressed us out.  But Dan couldn't even go see her.  Then add in that she got sent upstairs to NICU and there was no way he could then because you have to be able to wash your hands good and for 3 solid minutes up to your elbows.  His hands don't uncurl and  stretching his arms out cause so pretty bad pain.  Washing his hands while he is in the shower is about all he can do and I wash them then and it is HARD!  On my way home from the hospital I was rear ended by another car (twice before he finally came to a stop).  All I could think was "really? I needed that?" then my insurance company proceeded to harass me.  I was on the phone with them for over an hour and it wasn't even my fault!! I can't even imagine if it had been! We get up Friday morning and take Dan in to have his peg tube inserted.  In case you don't know it is the feeding tube the put straight into their stomach for when they can't swallow anymore.  Ours was just preparatory at this point but I think we are heading toward it pretty fast! Now here are the things I learned on this one. 1- At the VA they are not going to keep them overnight not matter what the paperwork and their doctor says.  So don't get all excited about being able to sleep thru the night because it is not coming!  You are going to worry and get less sleep! 2- They will give you all kinds of instructions for when they come home but it will be contradictory and quick.  My 24 hour training took about 30 minutes!  3- Do the best you can because you are all he has to do it.  4- Pay close attention because when you get him home you will have 500 questions that can't be answered because they closed 10 minutes after then kicked you out the door.  and last but not least the doctor is going to bully you and nothing you can do or say is going to help.  Now for the good things I learned. Have a nurse coming to your house already from a reliable home health care place and don't wait like I did, call her right away and ask her to come over and get you some training! Now Ashley our nurse came over*on a Sunday and spent a couple of hours with me on her own time to help me.  Your nurse will be your best friend if you have a good one.  Her best advice of the day was "Don't be afraid of the tube"  the doctors was "if the tube falls out just bring him back and we will put it back." and oh yeah my favorite advice from him. "if it starts pouring blood be sure and bring him back here we have his records." So I explained we live an hour away.  He said that is okay I should still bring him there.  Ashley on the other hand said "call an ambulance or go to the nearest ER." He is on Coumadin by the way so he can bleed to death in a very short time! Normally my advice to you would be stand up for your spouse and yourself but in this case it is go anywhere but the VA!!!! 
Our good news for the weekend is our daughter and granddaughter got to go home and our paperwork for our van is in the mail so we should be able to get it any day now! YAY!
So this is just another weekend with ALS. 

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