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!

35 years together

We have been married 35 years as of yesterday.  I am not going to say this last year has been easy or that it was a breeze and we are the happiest couple ever because it wasn't.  It has been a hard year.  Yes we still love each other but having one partner totally relying on the other is hard on them both.  Dan gets frustrated that his body doesn't work anymore and I get tired from doing so many things.  My life is out of control, my house is a mess, I never have enough time to get things done that need to be done, I am exhausted most of the time.  Up until now we have been so blessed and have what many call a perfect marriage.  I think that makes this even harder! We have breezed thru most years.  It was hard when one of our parents died and the year my brother died.  It was hard when we had to move but we moved a lot so it got easier.  It hasn't been perfect but this, this is real and it is hard.  So many people tell me I am so wonderful because I am sticking with him.  What on earth are they talking about I always think.  This isn't the time to walk away.  This is what your marriage vows talk about "for better or worse, for sicker or poorer."  This is sicker! This is it.  As I watch him getting sicker every day, getting weaker everyday, needing me more every day how could I walk away, he needs me and we love each other.  Many times I say "we had a bad day" because to me this is happening to both of us.  This disease doesn't just affect just Dan it hits him, me, our children and grandchildren. Even our little grandkids pray for Dan all the time.  One of the littlest prays "bless pawpaw, bless papaw" They all see that he is sick and getting weaker every day.  This is not a disease that you can hide or if you take the right medication you can live forever and nothing changes.  I wish he had one of those, or cancer where they could take it out and with chemo he could possibly get better.  But no, it's not like that.  There is no medication, there is no exercise, there is nothing that can change this.  It takes over his life, over my life it is out there eating away the motor neurons inside my husband's body.  The doctor says "you know this is going fast right?" Well, I am not stupid so yes I do know it.  I can see! Not that I want to but I can.  So here I am starting my 36th year as his wife with love in my heart and praying we will make it to our 36th anniversary.

Doesn't matter that I am sick

Things I have learned today.  It really doesn't matter how sick you get because you still have to take care of them.  There is no break, no time out, no off, no weekends, no holidays.  I worked as hard on Mother's day as I do every other day of the week.  It is the same as it was when my kids were little.  Life goes on everyday no matter what.  One day of the week is no different than any other.  I miss having Sundays as a day of rest. 
          What I learned today about ALS.  Things change fast.  So take the CNA when offered.  You will need them! You can't do it all yourself no matter what you think.  For the last year we have been trying to handle it our selves.  I was raised to believe that you took care of yourself.  It was no one else's responsibility to help you.  You can't do it by yourself.  This is a BIG illness and it takes a lot of energy, and there is a lot of doctor's appointments, and a lot of needs to be met.  Most insurances cover a CNA and she/he knows how to do all those things you don't.  If nothing else let them teach you so that you don't hurt your back.  I am pretty sure mine is going quick because I really don't know what I am doing.  I am learning as I go and many times someone will say "why are you doing it that way, try this way" and it will be so much easier!!  Ask questions!! And let people help you! I know it will be hard but I think I would be dead if I hadn't had my brother here.  He and my son in-law have done a ton to help.  When Dan got to where he couldn't do the stairs they literally walked his feet on them while the other one held him upright. 
         What I learned otherwise.  Plan their funeral.  I am sure you have heard it more than once and I am sure you thought as I did "Stop saying that he is not dying yet" or "We don't need that yet"  But it really did give me one thing I didn't have to worry about.  And right now, one thing is a LOT!
         We are living day by day.  It is not easy and I am just trying to stay ahead of the curve ball most days.  Today is a bad day it started that way and hardly ever changes once it gets started that way.  I just hold on for tomorrow and hope it will be a better one.  He took a few real steps with the help of a walker yesterday.  That was really big so I will take a bad day today for a few more good days in return.

Some days are hard on all of us

Yesterday was a hard morning for Dan.  Some days are like that.  I have found that we have no clue whether or not tomorrow is going to be a hard day.  He just wakes up like that.  I think that Dan is just trying to keep me on my toes.  But last night he was able to get out of the bathroom without help and used big steps.  Well, big for him anyway.  He hasn't done that in a while.  Things like that are so hard for me because they give me hope that we are going to get thru this and that he is going to live for a long time.  Then he will have another major setback, and it is usually the next day or the day after.  So now I live in fear of what it is going to be.  All I want is my dear, sweet do anything for anyone husband back.  Not this angry, sometimes mean fellow who has taken his place.  And I get it.  I don't want anyone to think I don't but it is so hard to set apart the man who is sick for the first time in his life and having a really hard time dealing with what is happening to his body to my awesome husband who never would have yelled at me.  I have to consciously think "this is not my husband it is his illness" but when I don't think it fast enough then I get my feelings hurt and that starts a really hard cycle to get out of.  Usually takes me a day or two and I always want to snap back at him "I am doing the best I can" or "I do everything for you why isn't that enough".  But why say anything since it won't change anything and it will just upset him. And he cries so easily.  Bless his heart it is hard for him to not cry.  Yesterday at church there was a lot of our old friends there and he cried a lot.  Seeing them as they came over to shake his hand or give him a hug made his day.  He was so happy but the tears came.  He also laughs easily and once he gets started he has trouble stopping.  He and our youngest get going and set each other off.  The worst part is his little boy attitude like "letting gas" really tickles him or the other day he pooped in his pants and that really tickled him.  All the while he was saying sorry he laughed.  Makes it hard to believe him.
          ALS lesson of the week.  A Hoyer lift is great but wow is it hard to use.  Order it early so you can have time to practice.  I practiced on my son in-law and even with him being able to move it still took me 6 tries to get him to where he would move like he is supposed to.  It works much better if it is not on carpet.  We are going to use one of the plastic things for the floor that Dan used his computer chair on.  We are going to get the biggest one we can find.  We were told we could use plywood but then I would have to wear shoes all the time.  And I hate shoes but I hate splinters even more!
          Lesson learned this week about death.  I found out that if your spouse has served in the military you can have them cremated for free and they will then put them in a vault at Leavenworth for free.  And did you know that they charge you per pound to cremate? A friend of mine just had to go thru that and at the last minute found out the military would take care of it. Thank goodness since they were going to charge her over a thousand to cremate him since he was so heavy.  He had swollen up the last couple of weeks.  BTW: He didn't have ALS.  Not sure if they swell or not and I am not looking forward to finding out.