Friday, July 31, 2015


First we found out he didn't have a UTI they think the muscle in his bladder has stopped working.  So they put a catheter in. Which means another tube for me to keep clean. He laughingly says a tube to put water in and now one to let the water out.  But of course he has had problems with the tube.  Two days in his urine turned pink.  This meant he had blood in his urine.  So we called our Hospice nurse in and she reassured us that it was ok.  It was a light pink, which is better than red.  She said that it would clear up soon.  The next day it was still pink.  And then today it is still pink!! So of course I am still worried about that. 
     Good news for our week.  Dan got his trilogy.  It is a machine that will move up with us as his breathing gets worse.  Turns out it is really easy to use.  While they were setting the numbers and adjusting it to Dan it seemed to be taking his breath away.  Kind of scared me but as he went to sleep tonight with the same numbers he slept so good.  So don't let it scare you.  I guess in the beginning it feels different to them so it sounds different.  But in the end it is good. 
     I want to put in a if you get a chance to get Hospice, then do it!!! It has been a Godsend.  They handle things you just don't have time for and plus will help you with getting your medicine, calling doctors, turning in and ordering lab test, bringing over medical supplies.  Plus you get a CNA for however many hours you NEED her.  Not want but need.  So right now I just have one for 3 days a week for about an hour.  She comes over and bathes and shaves Dan.  I never minded  the shaving but the bathing was hard work.  Even with the transfer bench.  Which BTW is the best invention! I love our transfer bench!  It saves my back a ton.  She does a great job.  Plus in the end neither I nor Dan will have to be alone.  They volunteer hours to sit with you until your family can get there and then they will stay with you until your loved one is taken away.  It is nice to know I won't have to be alone.  But I probably won't need this part since most of my kids live close but it is nice to know. 

Sunday, July 26, 2015

Just when you think things have slowed down

Just when I thought the progression had slowed down he has developed more problems. Not any we have dealt with before so we are once again starting from scratch and learning how to take care of something new.  When we got in from church today he needed to urinate but couldn't he pushed and pushed.  It really hurt him and no matter how he pushed he only got a few drops out.  So he gave up and I went to take a nap.  When I came back he had peed all over himself. He said he tried to wait but it just came out.  We changed his clothes and a short time later he said he had to pee again.  So I went over with the urinal and the same problem occurred.  A short time later he had urinated on himself again.  We are not sure what is going on but he is hurting again so we will be doing a Doctor's visit in the morning and start the testing to figure out what is going on this time. 
     You know this is one strange illness.  There are so many problems that come from it and many of them can kill you.  You never know what it will be.  There is a list as long as your arm that can cause problems/death.  As I was laying in my bed next to him earlier this week I woke up terrified.  Not a little scared but that fear induced trembling and just wouldn't stop.  I was so scared and I laid there and listened trying to figure out what had caused it.  There was nothing wrong in the house so I prayed and tried to relax.  As I laid there I realized that one day I will feel that and he will be gone.  I realized then that I really don't want to wake up next to a dead husband and thought to myself how selfish I am.  But I just can't stand the ideal of him dying there next to me and me not able to do anything about it.  How awful that will be but it will happen maybe not today or tomorrow.  Probably not even next week or next month but it is in our future.  So what do I do? How will I get thru this? Not even this but how will I get thru the ideal of him dying.  I will do just like I have been doing for months.  I will put one foot in front of the other.  I will put on my I am okay face and I will stand strong for as long as Dan needs me too.  And if he dies in our bed I will know that he was not alone which in my mind is way worse than anything I can imagine.  So whatever this problem is and whatever I have to do to help him thru it I will do it because that is what you do when you love someone.  Yes, I know this post has been more of a downer than I usually post but today has been hard and it was time to post and I am trying to post every Sunday, Scheduling helps I have found.  So I am sticking to it.  I will probably post something more uplifting or helpful later in the week.

Tuesday, July 21, 2015

He has always know how

There are so many things he knows how to do that I have no idea how to do.  Now I am having to figure it out.  He is a natural smart but I am not.  So when our server went down I had no thought what to do next.  It has been down for a couple of weeks now and we have found that 4 months of pictures are now missing.  I am panicking but know that there is nothing I can do.  Because I can't do like he could and just go downstairs type some stuff in and fix it.  So here I sit going thru sites and looking for cloud backups.  I am not even sure what a cloud backup is but I know we need one because I would hate to lose 13 years worth of pictures that we have stored.  One of our daughters came over last night and Dan talked her thru a temp fix.  It took them hours to do what he could have done in minutes.  But we all have more trouble understanding him now and that made it even harder.  So she sat patiently waiting for each letter of each word to come out.  Bless her heart she was so patient.  Occasionally I would hear the frustration in his voice.  I know he just wants to put his hands out there and just get it done.  It must be so hard for him! Some days I think it would be so much easier if it was me.  He was the one who made the living, he is the one who knows how to do things, he could have made the things I needed and honestly if I died I think he could just move on.  He is strong like that.  Me on the other hand fear life without him.  He is all I know! So I am learning.  Today I am learning how to fix my toilet.  I can't wait for him to come in from out of town like I could have a year ago.  Today I will do it myself.  I will learn!

Saturday, July 18, 2015

We have our van

It has been a really good couple of weeks.  Our morning CNA is in place and really has been a life (and back) saver.  Her name is Melissa and she has really taken on the hard stuff.  I was sad to learn that she will be leaving us in August to go back to college.  So we will have to retrain in a month or so.  Our afternoon CNA, Ruby will still be in place and we really like her too.  She doesn't spend as much time or energy here.  Not because she doesn't want to, we just really don't have anything else for her to do.  They tell us as we need more help it will be great to already have her in place and she will already know us.  So that will help.  As it is Melissa does his baths, and rubs her hands and feet.  Both of which is going great.  He has some movement in his hands and they aren't stiff anymore.  I can even get his brace on without him crying out in pain.  Which is awesome!!  He can flex at his ankles, too.  That is also awesome.  I take anything as progress.  Even if it is only for a day, hour, or even minute it gives us hope.  And hope can make anything bearable.  He is still taking Protandim which he is sure is helping but since he is choking way more and can hardly speak most days I really don't think that is it at all.  I think that God is blessing us with tender mercies so that we continue to have hope and it gives us strength.  Some days hope feels like all I have.
       I know I have to stay strong for him.  And most days I am.  But when I am not it is the small things that do me in.  Like earlier this week I saw a old couple dressed alike, holding hands and out for a walk.  I cried and cried! Not because I thought Dan and I would ever dress alike  (I think that is weird! but that is just me)  but just the very thought that I will never grow old with this man who makes my heart happy just to be in the room with him.  The thought that I am going to be by myself for years before we get to be together again.  These things are hard to think about and I am crying just writing them.  I want to be with him but that is just not to be.  But I still pray that our days together can be happy days and I look for ways to make us both enjoy our time together.  So we cry and try to make it thru the hard days.  The easy days we laugh and are happy to just be together.  Those days are what make the hard days livable. 
     We finally got our handicap van and then we all piled in and went out to eat with Dan and his easy in and out.  It was wonderful to finally be able to use his electric wheel chair.  He can ride down our new ramp that some guys from church built and into our new van and then off we go.  No pain to Dan and that is wonderful!

Sunday, July 12, 2015

what was hard is now easier

I was looking back this week and realized that a lot of things I thought were impossible for me to get thru are easy now! Even simple things like brushing his teeth.  When he would spit the sound would remind me of the sound at the end of someone vomiting and make me so nauseous.  Oh my goodness! I would try every time not to vomit, too! LOL!  Now I have to hold his head up to brush his teeth but the sounds don't bother me at all.  My arm gets tired after holding his head up but it doesn't bother me.  So it is easier.  Next is giving him his shots.  I was so worried I was going to hurt him but have found that even though it burns him it is ok, because it wasn't anything I did.  Lovenox burns.  It does when anyone does it.  A couple of tricks for it not to as much is let the alcohol dry before you start the shot. And another is don't wipe afterwards once again it can make it burn more.  If Dan laughs he can pop that needle right out of his skin and we have to start again.  So go fast!!  Next, is working the feeding tube.  It scared me so much!!!  Even after the nurse said to not fear it.  But I couldn't help it.  It was scary! Now I work that tube like I always have.  I have also found that I can get the extra air out and his doesn't let near so much wind so he doesn't toot every time we move him.  They smelled so bad!! It was awful.  Now he very seldom lets air.  A nice thing in my eyes and to my nose! :)  Then we have bodily fluids.  Do I like them - no way!!! But now I can work with them.  I wipe his behind without gagging, he pees on me regular (without meaning to), I have to wipe his nose and get snot on me pretty regular.  It has become a standing joke that every day I get some kind of bodily fluid on me every day, it's true but I can laugh about it now.  I no longer gag every time, or feel like I am sick inside or feel like I just can't do I one more time! As he is sick more I become better and better at taking care of Dan. 
     We got a ramp this weekend.  One of the men from church who helped Dan last week volunteered to make him a ramp on Saturday.  He showed up yesterday morning with some people from another ward at church and they went to work.   They worked until early afternoon when the second shift kicked in and went to work.  They stopped at 8 with only a half of the ramp not painted but everything else was done.  We woke up this morning and it was finished.  They had showed up some time after 1030 last night and finished painting it.  Super sweet!!
     Last but not least our morning CNA is really getting in there.   She is doing Dan's showers, shaving, and exercising his hands (which are a little more flexible now).  Our afternoon one shaves him and rubs his feet and keeps the circulation up and moving.  It is easier now? sure it is.  But that is not saying it isn't super hard still.  The more help I get it is because he has gotten worse to earn.  I would rather have Dan well and no help at all.  That would be perfect.  Next though is having help.  That is wonderful and gives me more time to be his wife.  Awesome!
     I almost forgot to mention.  My brother who has been living with us has been gone for a week and I made it thru.  I didn't think I could but with the help of my morning CNA, some sweet brethren from church we made it.  I am glad to know I can but sure hope when he gets back tomorrow that he doesn't go again for a little while.  But now we know that he can heave a morning job and all will be well. 

Tuesday, July 7, 2015

Here we are again

Things are getting better around here.  Dan got the paperwork needed to get our handicap van.  We are just waiting for a guy to put his john hancock on it and we are done and can pick it up!! It is already paid for and everything! YAY! Then some guys from church was over and helping us get Dan inside on our way home from church.  And he said "I am an engineer, can I build you a ramp" Of course I said yes! So he came over, measured everything, his brother came and they designed it.  They have already gathered things they needed to make it (people donated) and they are coming Saturday morning to put it up! I am so excited! Dan can come and go by himself! That will make things so much easier!  Then our contractor came today and is ready to put in his bid to get the house redone and ready to put Dan downstairs where it is safe.  So that is moving forward too. I have a lot of work to do to get the Family room ready to be redone but it is in motion now and that is wonderful! And we now have 2 CNA's and a nurse coming and seeing us! One CNA, Melissa comes every morning to help me get him up and going and does his PT.  The other, Ruby comes 3 days a week and does his baths, shaving, nails and rubs his feet. I feel so blessed! Things are really starting to come together!
      We are having to put his meds in the tube now, We were hoping for a few more weeks without it but that was not to be.  Even with all the trouble the tube has been I am really glad we have it now that he is choking more.  Putting the meds in the tube sure makes things easier for me, too.  I am also having to hold his head up to brush his teeth.  He just can't hold it all the way up by himself.  Bless his heart he is really folding in on himself more and more.  But we are getting it done. Some days are hard and some are harder.
      Today I heard a couple talking and she said "this is my love (introducing her husband).  We have been together for 60 years" and I thought wow! Dan and I had planned to make a lot of years.  We thought it was doable since we had married so young (I was 18 and he was 21).  But now when I hear things like  this sweet couple I cry because I know that I won't have that.  I will probably have a lot of years alone and that makes me so sad.  I have only ever been part of a couple.  We married the same week I graduated high school.  We had plans and they were good plans and now that is all going away because of some stupid illness that no one can even figure out where it comes from or how to cure it.  I have never hated in my life but I really hate ALS.

Wednesday, July 1, 2015

Second ER visit down

I have never been so scared as I was this afternoon when my husband said "wow" and I looked over and his shirt was covered in blood! The gauze surrounding his peg tube was full of blood and was congealed on top in puddles.  WOW! It was so scary! Since we had just started Hospice today I wasn't sure who to call.  So I called 911 and soon the firemen were at the house and had things in hand.  They were so calm that it helped a ton! They had his information down, had packed the wound, and were ready to help the paramedics when they got there.  They also carried him down the front stairs and out to the ambulance.  It was super fast and seemed easy to them.  They carried him to Shawnee Mission hospital and got him checked out.  They did some labs (everything was good), a CT scan (they told me that he wasn't bleeding internally), then they went to work on my hubby.  They hurt him so bad.  It was crazy! They pulled the tube out to the max and put meds in that were supposed to help him clot,  then compressed it.  He bleed thru the gauze.  Afterwards the doctor gave him a shot to numb it and went to work scrubbing it and cleaning it.  He put more medicine on it (still trying to help it clot), Then pulled it tight, then he loosened it and put some more packing on it and pulled it tight again.  Then they gave him a dose of morphine and sent him home.  They helped us put him in the car and off we went.  When we got home our home teacher was here waiting to help us get him in.  He picked up one side of the wheel chair and my son picked up the other and up the stairs they came.  It was hard work but they got it done.  We have him upstairs in bed now but I am still scared. So off to bed I go!