Vacation

We are on vacation.  I didn't know if we could make it but with help from my brother we are in Idaho and spending peaceful time with our son and his family.  It was actually a nice trip.  It took us a lot longer because we stopped to spend the night and stopped every couple of hours for him to have a break.  But it was nice.  It has been good to be here.  Dan has seemed more peaceful and happy.  It has been nice being in a smaller place so I can always hear Dan when he needs me and he loves that.  It has brought him such comfort knowing he is not alone and won't die alone.  He even let me leave his mask on while I wasn't in the room. It was a nice change and I have been able to take longer breaks because he feels secure.  I am thinking about getting a small apartment to live in until our house is finished.  If it brings him peace and makes him happier it is worth it.  We will see how I feel in a week.  If I still feel that way I will get on it as soon as  I can.  Only bad news is an increase in how he is drooling and still having bladder spasms.  But nothing new.  Thank goodness!

I will call you back

It was a really hard week! I know I say that a lot but it is always true.  But Thursday was a down day for us.  Nothing bad happened and that is the best news I could ever give. I do about 3 hours of Nursing for my sweet husband every day.  An hour in the morning and 2 at night.  I can now do everything from give a shot to clean a catheter bag (after changing it out of course!),  My life is not fun but it is necessary.  There are so many things that I used to love to do that I no longer have time for.  There are so many things I want to have time to do but no longer do.  That is including returning phone calls.  I tell people I will call you back with the answer but I never do.  I will call you back after I get Dan settled but I never do (get Dan settled and call them back). But I don't.  I didn't realize this until a couple of nights ago.  I laid down to go to bed totally exhausted and it was midnight.  As I was in that gap between total exhaustion and sleep I realized that I hadn't called anyone back in weeks.  I just don't have the time and I honestly forget.  My brain is full of all the things I need to do.  Many of which I am not qualified for but have had my 5 minutes of training so I am supposed to know how to do it.  These days I am so tired that I am doing everything automatically.  As the day is finished I have to ask Dan what I had forgotten to do this time.  Most nights there is nothing but some nights there is something.  Dan can't talk anymore at least not where anyone can understand him so when he is trying to tell me we both get so frustrated.  It is awful! Dan's muscles are worse.  He can't help at all when we try to move him.  His back won't hold him upright and his neck won't hold his head up.  So to brush his teeth I have to either tilt him back in his recliner or hold his head up with one hand while brushing his teeth with the other.  It makes things really hard.  The other night he had something stuck so I tried picking his teeth which I hate doing but have to do regular.  But since it didn't work I was trying to floss them but he wasn't having any of it so he bite me.  Can you believe that?? Then he said it was my fault that he bite me.  He said I put his head back to far.  But since I barely had it back and his mouth was barely open not sure how it was my fault so I told him no it was his fault since he is an adult! He looked shocked that I had defended myself at all.  I realized that I let him get away with blaming me a lot! I knew then that I should have been defending myself a along.  It is one thing to baby him because he is sick but another to take the blame for everything that was happening.  Everything that happens had become my fault for some reason or another.  He was always laying blame.  Because he is dying I have let it slide.  My brother says we are entertaining in our arguments.  We had never had one before he got sick so we are really not any good at it.  He had never even raised his voice at me. Now he says "you made this happen" Me " what?" Him "I hope I die soon because I know you want me out of your way"  Me "WHAT??"  Then all the sudden I am apologizing and saying how much I love him and how sorry I am about whatever! But I have learned the trick now.  And it took a major one for my eyes to be opened.  I was exhausted when it started and when he got to the part where he knew I wanted him dead.  I said no that at that moment I wished I was.  He didn't even care.  He just went "um" and it stopped there.  Well I have caught on now.  These little arguments are going to go a little differently now.  It also helps that even though he is yelling I can't understand more than 2 words out of 20!  So I may win a couple now.  Who knows??

Some weeks are so busy!

This week is crazy busy! On Monday we had a 9 am appointment an hour away.  So we were up at 7 and Dan was exhausted all day. But we saw the VA ALS doctor.  WOW that was a lot of initials.  VA is the Veterans Affairs out at the Veterans Hospital and of course you know what ALS is or at least you have a pretty good idea by now! He also see patients at KU (Kansas University) So he just signed on there website as a doctor and read what Dr Jeffrey Statland had written.  I just want to add here that Dr Statland is one of the best in America.  He specializes in ALS and does a great job.  He is so calm and sweet and will answer any question and you can ask him anything.  You can even send him an email and he will get right back to you.  He is wonderful! So back to the VA doctor story.  I can't even say his name! So when he introduces himself I was trying to hard to hear how he says it that I missed whatever he said until we got to his office.  Anyway he just looked up what Dr Statland had said and then just did a couple of other test and called it done.  Then he asked was there anything he could get us that we didn't already have.  I asked "like what".  So he listed some things and we already had everything he could have given us. and we had on order the last thing the VA can give us.  That was kind of nice.  I wonder if we have to keep going out there now that we have everything? 
    Late yesterday *Monday in case it takes me a long time to finish this one!  we got a phone call telling us that Dan's communication device is in.  They said we could come at 10am today and pick it up so of course we went and back out to the VA we headed. So we had to get up early again and head out.  So tonight Dan was trying to work with it and failing because he was so tired he couldn't hold his head up.  He went to bed pretty frustrated! I would say that he will have better luck tomorrow but we are heading to the Urologist in the morning. He is hoping to get his catheter out but I am not counting on it.  All our ALS medical people are not even surprised that his bladder could have stopped working right.  I guess we will know more tomorrow. 
     Believe it not I am in the Living Room without him.  That is a miracle! He really doesn't like me to be away from him while he is sleeping.  He is afraid that he will choke and no one will be there to help him.

Another week

As we start another week I realized a few things.  One he was diagnosed (second opinion) a year ago yesterday.  And another is a year ago today Dan was dancing at our baby daughter's wedding.  He was worried about it but was able to do it.  He also stood for an hour while the pictures were being taken.  He was so healthy except for a weak arm and weak leg.  But it was just weak nothing big.

 The daddy/daughter shot. Even having just gotten bad news he was still thrilled to be there with her.

 

He was so happy to dance with our baby girl.  And she was thrilled to be with him.  We have 2 daughters who aren't married yet who are worried that he won't be at their weddings.  I tell them if they want him there they need to get out there and date! :)

 

Some days we worry about a lot of things other days we just try to be happy.  But this week we did get a bit of good news.  He doesn't have to take the Lovenox shots anymore.  I am so excited since that was twice a day and it burns.  He was super excited that that was over! For me since I don't like to hurt him I am super excited too!  We went to see the pulmonary doctor this week and found that his breathing hasn't changed much from 49% to 46%.  So he said he doesn't want to see us for 4 months unless we have new problems.  Like if we need a trac. Something he has not decided if he wants to get when the time comes.  He was so sure what he wanted until now and it gets closer so now he is not so sure what he wants.  He wants me to decide but I told him that it is his body and he has to decide.  So he is working on figuring out what he wants.   I believe when it gets even closer he will know and if not we will go with what he decided a while back when he could still talk. 

It gets harder and harder to understand him.  Some days I can't understand about half and other days not even that.  We found out this week that the reason we don't have his communication device is that it wasn't marked urgent.  Turns out ALS patients are supposed to be marked "urgent" so the guy in charge is planning to do that on Monday so we can get it soon.  I hope because these days I can't understand so much and he has so many needs.  I am not sure why but I laugh when he tells me long drawn out sentences.  It just hits my funny bone just right and then he gets really mad.  I feel bad and I am not sure why but I do it any time it is long.  On shorter sentences I do fine as long as I can figure out what we are talking about I can figure the sentence out.  Some times we both get frustrated and he will just say never mind.  Church was great today.  We have so many people who love us and care how he is and actually stop to listen to the answer when they ask how I am.  Some times I feel so broken that I don't know which way is up and other times I am able to learn how to take care of the new problem he has.   Yes this week was hard but I don't see any easy ones in my future.  So I will press forward. 

 

 Dan a few weeks ago with his sisters.

 

 

I am no longer me

I have found out so many bad things about myself in the midst of all this.  I have very little patience for whiners.  I can't understand people who do not speak clearly (I think this is because I don't hear well or at least I hope so),  I can't drive a wheel chair.  Today after church I caught Dan's hands between the door and his wheel chair.  No matter what I do it will never be enough.  No one and I repeat no one Loves Dan as much as I do!
     This week has been awful for many of the reasons some I listed above but mostly because our CNA's are gone.  One went back to college and the other messed up her knee so we have replacements for one and nothing for the other.  The 2 replacements CNA's have been terrible! I can't believe the things they have done to my poor dear husband, such as when giving him his bath they didn't wash his privates (as we call them).  He has a catheter in and has to stay clean there. They also almost dropped him twice and lifted under his arms even after he told them how much it hurt.  The next time they washed his face after the washed his behind.  He explained it was ok since they used my wash cloth to wash his behind.  Then they used a dirty brown towel to dry him.  Yes he has a clean one yes I pointed it out to them.  I told them blue.  Dan said maybe they are color blind!  They almost dropped him twice.  Then the last two from Friday- I wouldn't let him bath him since they hurt him and did all kinds of weird things.  So all they had to do was bring him downstairs.  Just pick him up and pivot, twice.  Not that hard but I had to catch him! Sheesh! They don't take good enough care of my man.  Not sure what I am going to do about it! I sure hope Ruby is back this week or I am back to doing everything myself!
     As I am changing so is my hubby.  He is short tempered now.  My sweet man who never raised a voice yells at me now.   He has phantom pains and phantom feelings.  Sometimes he feels a bug on his face but there is nothing there. He will say that his foot hurts and then that it doesn't he doesn't know what I am talking about.   He complains all the time of his tailbone hurting or his back hurting.  They take turns hurting but I think they really do since his back hurt before all this and with all his sitting I am sure his tailbone hurts now.  He thinks of ways that he can die.  Such as the other night as we are getting ready for bed, which is an exhausting task. He comments that if I leave the room while he is sleeping and he is wearing his bi-pap that he could vomit and choke to death. He was really concerned about this.  So I laid there waiting for a problem since I assumed he must be feeling nauseas or something.  Since he never throws up.  But nope it was just a passing thought for him.  Something for him to worry about.  Then there is the day a week or so ago where I put him on the toilet and didn't come by in 15 minutes so he started to panic (he had told me to come back in an hour and I came back in 20 not an hour!) and he came unglued.  When I got in there he was sweating and screaming, like a 2 year old throwing a really big temper tantrum.  He wanted off that toilet now and didn't want to wait not even to wipe.  So he has to wait a minute while we wiped.  But he was mad.  BTW: Dan used to never get mad.  So now when he is in the bathroom I have to sit in our bedroom and wait for him to poo.  Sheesh!  I used to love to watch TV but I don't have time to now and when I would usually watch I am now sitting on my bed waiting for him to poo or for fear of him waking up and not finding me there and getting scared. When this all began he had in his mind what he wanted to happen.  HE wanted comfort care only.  Now the fear has gotten the better of him and changed his mind in many ways.  We filled out a DNR a month or so ago and now he is not sure he wants it so we took it out of his hospice folder and put it aside until he decides.  He can't decide if he wants machines hooked to him so we are waiting on an advance directive.  One thing he has decided is I am a terrible wheel chair driver and I am pretty sure he is sticking with that one.  Here is a few pictures from the last couple of months

This is Dan with our great nephew who came to visit us.

This is Dan with our boys back in June

This is me and Dan

This is us with our kids

This is Dan and I with our grandchildren