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. 

Bad news and worse news

We have had a really bad week here.  The doctor told Dan this week that if he had goodbyes to say or business left unfinished he needed to take care of that because he is not guaranteed any tomorrows.  When we asked how Dan was doing he said that Dan was on the fast track downhill.  It was really hard to hear so many truths but we needed to know so that we could prepare for what was to come.  Dan is scheduled for surgery tomorrow morning to get his feeding tube installed.  I am actually looking forward to that part because giving him his medicine will be easier without the worry of it choking him.  But I am scared.  The doctor said that there can be a lot of complications since his breathing is becoming so hard.  His numbers had dropped a lot in the past few weeks!  He was at 66% and now he is down to 41%.  That is a huge drop! When the doctor started doing test he found that Dan's left thigh is the only muscle on his limbs that still works.
     What we learned that was useful this week- You can buy a wheel chair or scooter on Craigslist super cheap.  As little as $300 for a good one! Doctor said to check ebay because they have them cheap too! Who knew to check there???
      My good news for the week is my baby daughter gave birth to her first daughter! I am so excited but Dan seems not to be as happy as me.  Part of that I think is that he can't hold the baby without help since his arms don't work anymore.  He always loved to hold and love on kids.  His favorite was always that sweet little cry that a baby has.  He loves to hear that.  When you have just given birth it is the sound that a baby makes that says he is alive and well and he wants everyone to know it.
     Then to top off my week I was rear ended! Like I needed that in my life! The guy hit me so hard that he bounced off me and hit me again! I am so sore!  But that seems to be my life, having sore muscles!  But once again I am just glad to be with my husband in the little time we have left.  Love deeply and be strong.  Have faith in God for He will get me thru this hard time!

It has been a hard couple of days but a wonderful Father's day

So on Friday we went over to the VA for an appointment.  We actually got done in 3 hours which is a record! First we went and saw the pharmacologist who ordered his shots and gave us a schedule of how to clear Dan out so that he can have his peg tube (feeding tube) put in on Friday.  Then we went and saw the Speech therapist and the person from the company that we are ordering his communication device thru. (Tobii Dynavox)  Which is great since I can only understand him every now and then.  Usually when he is yelling at me.  Which is sad since he never yelled at me before he got sick.  Back in January he changed to a yeller.  Anyway while we were at the VA we went by and picked up his cervical collar.  He said it really helps when he is tired and is having trouble holding his head up, which also helps his back.  Then we went by to see his nurse Nikki.  She was able to help us check and see why we didn't have a CNA yet and gave me some advice on how to help Dan better.  She had had a really bad week because 6 more people had been diagnosed with ALS in the past 10 days.  That is a LOT! I told her I really want to start a support group so that the ones who had been there can help the ones who are just starting out.  She recommended someone whose husband has already died to work with because she would be really good, too.  After we saw Nikki we went down to see Brent who works with the PVA.  He didn't even recognize Dan.  He told us that since Dan has gotten so much worse that Dan could get more money more than twice what we are getting now.  That will help a whole lot! Since then we can hire a CNA and get some help in here.  He told us that we had to have a quick check up with the benefits people so they could see how much worse he had gotten.  After we left Brent we went and picked up the shots, Rick had ordered and we headed home.  When we got home we were all exhausted so we took a nap.  Saturday we were super busy again and then today the kids came in to see their dad. Well all but 2.  One is on vacation and the other lives in another state.  It was great to have them all here so that was my favorite part of the weekend!  Our son from another state skyped in and the daughter on vacation called and sent a video to her dad.  It was a sweet time for him.  I love my family so much but some days it is hard to cope with having a husband who is sick and he is tired and having such a hard time with not being able to take care of himself!

This is hard

As I sat last night and cried I thought I just can't do this anymore.  I knew it was going to be hard.  I had not lied to myself that this would be easy.  I knew that there were going to be tears, my dear sweet husband was dying.  But I never knew that I could be so tired.  I am exhausted! My day goes something like this- get him up, get the urinal, get him dressed, get his breakfast, get his medicine, sit with him (he gets offended if I don't because he thinks I don't want to be with him anymore), get the urinal, get tired of the TV being so loud, so I go to my room to take a nap, only to wake to his needs having multiplied because I wasn't there for an hour. Get the urinal, (btw: I am dumping it in the upstairs bathroom since our downstairs one isn't finished yet), Feed him again, rest for an hour then take him upstairs, put him on the toilet, wait an hour, get him off, wipe his bum (praying that he can poo today or he will start to hurt which I don't want), 2 or 3 days a week I give him a shower (using a transfer bench).  Somewhere in here I try to get him shaved, trim his hair (around his ears, in his ears, nose), clip his nails(fingers and toes).  I think you get the idea! Never do I sit alone and just be.  The other night all I could think was I just want to be his wife again.  I don't feel like his wife anymore because I am doing all these things for him that is more caretaker.  I miss being his wife! Then last night we got into the whole, he doesn't want CPR if anything happens.  We have discussed it before but now he is laying the blame on "I just want to get out of your way"  Where did that come from? Yes, I am tired but I don't want him gone, I love that husband of mine! Yes, I am tired and yes, this is hard but I agreed to in sickness and in health.  This is hard for him, too.  Sometimes he gets tired too.  I sure will be glad when the CNA starts so I can be his wife and just love him!

Right then left then back to Right

Last week was a tough one.  Dan's right leg doesn't work now and for 2 days his left didn't either.  We were worried that his days of walking were over.  Not that he walks anyway but he shuffles his feet.  Now he drags his right.  This whole time he has been able to stand for a minute or two so I could do the simple things like pull his pants up, wipe his bottom, transfer from toilet to transfer bench.  But for a couple of days that just didn't happen.  It was super hard and I am not used to him not participating at all.  It was Wednesday and Thursday of last week.  It made for a really hard week.  I was supposed to give him a shower on Wednesday morning and As I tried to get him up his legs buckled and down he headed.  We were barely able to keep him off the floor.  Which was super scary since he is on warfarin and was headed toward a book shelf.  He ended up on my brother's lap which was pretty funny after the fact and after the fear was gone! But he lived and we celebrate that fact every day. But yesterday was an awesome day.  He was able to drag his right and with his walker took a couple of steps! It was really exciting! We were able to get him to church! He and I both love being at church! The people in our ward are always so glad to see him and are so kind to us!