Progression and learning

Even after all this time I am still learning so much.  Our CNA is quick to say she learns more at our house than in college.  Dan has been running some fever pretty much every night and sometimes in the afternoon and evening too.  The on call nurse last night told me his rattle was gone (it has been there for 3 days and we haven't done anything to get rid of it since there is nothing you can do) and that fever was typical in ALS patients.  I am not sure I believe her in either case.  That just doesn't make sense.  I can't find anywhere where it says that he will run fever with ALS.  Well unless he has an infection.  She asked about him possibly having an UTI.  Well the urologist told us they would say that a lot.  He warned us that every time they don't know why someone with a catheter starts running a fever  they would blame a UTI.  He said seldom to never is that what it actually was.  We have seen 3 more urologist since then and they all said the same thing.  So I think since his urine is good color, no blood, no funny smell that a UTI is not the problem so I told her so. She said "well that makes sense"  So who knows what is going on.  In the mean time I am watching him and listening to him carefully so that I don't miss what someone is missing.  I know his time is short I can tell.  He also got a blessing the other day that said that he would soon be with his father and his Heavenly Father. Soon in the Lord's time could still be way out there but we have already made it way longer than everyone thought.  We are past our 6 months of Hospice.  That is all your are supposed to get.  But because he is still going downhill they had to re certify us or whatever it is called to keep us on.  But still he has made more than 6 months.  Dan has a doctors appointment next week with his specialist (the one we trust) and I am excited to hear what he has to say!

Nearing the end

I have found that even though we have talked about it for over a year and we have planned for it as it gets closer it gets harder.  I couldn't imagine it could or would get any harder but it has.  He is doing terrible and his breathing is so shallow.  He is sleeping A LOT!!  I think he is just exhausted from trying to breathe.  He had a seizure on Saturday night.  I didn't know what it was but he awoke with foam coming from his mouth (a lot!).  I cleaned his up and it was so cold he didn't get to go to church.  Single digit weather just doesn't seem like the time to go out for someone with weaker lungs.  But night fall he was coughing more.  Sunday night he had 3 seizures. One of which I saw which is the only reason I know what he was having.  Last night he only had 2 so I consider that a good thing.  He looked bad this morning and can barely stay awake these days so they have changed him to Qt10.  I understand that means a nurse every 12 hours and more CNA visits. Tonight there was a nurse here that checked him out and he looked a little better than this morning.  He is still super tired but his color is better.  I am pretty sure we are getting closer since he looks like it, breathes like it, and sleeps like it.  Tonight I asked some questions like what do I do if he dies? Who do I call? (hospice) What do I do then? (nothing they handle everything)  Who calls the funeral home? (they do) Will he need an autopsy? (no thank goodness). And many many more.  I am a planner I have to plan something to be happy.  So we are getting closer and I don't have to like it but it is getting here.

CPAP vs BiPap

     Dan used his BiPap for a short time.  He was using the one called a Trilology (sp?).  He really didn't like it but I made him give it a honest try.  He used it for a month or so and then refused one night.  He said no that he didn't want it anymore.  He was scared when he wore it that he would throw up and choke to death.  It also made him feel like he was suffocating.  He didn't like anything about it.  He said he would use his Cpap but never his Bipap again.  Well the only other thing he has totally refused was morphine.  He really didn't like how it made him feel and he made me promise to never give it to him again.  So when he refused the BiPap I didn't complain.  I explained to his hospice nurses how he felt and told them I wouldn't make him use it again.  I never want him to be afraid.  Now for this weeks problem- He can't turn it on any more.  You have to breathe and then it will automatically turn itself on.  He doesn't have enough breath to do that anymore.  So now I always give him a chance but he couldn't do it all week so I guess that is gone now.  
     He also can't get his mouth open enough to brush his teeth. So I use a sponge to get his mouth as clean as I can.  And then his lips are so dry the skin peels off or at least that is what it looks like so we use a sugar and a few drops of water to make a paste and then I use it to get all the old dry skin off.  So that it doesn't bother him.
     His skin is breaking down, too.  So we are working with bad elbows, heels and tailbone.  The hospice nurses have ordered us some new sheepskin heel covers, and some elbow covers.  They will hopefully help some.  I worry with him having so many sores on him.  But I am doing the best I can to keep the ones with holes doctored with antibiotic cream and bandaides.  And the ones that are not holes yet we keep skin protectant on.  It seems like things are happening so fast but he is still alive so I will keep doing my best for him and pray it is enough.
     We had a talk this week in which I assured him that I was going to be okay.  That he didn't need to worry about me.  I wanted him to relax and not worry about anything.  When it is his time to go I want him to go peacefully.  Everything I have read says that it makes a difference.  I will never want him to be in pain and I will never put myself before him.  I want the best for him so I want him to be okay no matter what.  The biggest lesson I learned was that we have to put others first.  If you love someone they should come first before all else.  I would never put my wants before his.  Love really is unselfish! Or at least the love we feel is!

This is Dan the day before Christmas.  He was watching us all play and watching me play with the grandkids.  I felt bad but he said it was okay that he just enjoyed watching me be happy.  He also says that with food.  We all feel bad eating in front of him but he said our enjoyment with food was enough for him.  If we wanted to we could join him for a can of Levity.  But that stuff doesn't smell like anything I would want to put in my mouth! Not that he didn't taste it first because he did.  Long before that was all he got to eat.  He said it wasn't bad, it is mostly corn products and that was his favorite food so maybe it is not that bad?

That is important to me

Just when I thought things had eased up a little it all came crashing down again.  He is not doing well at all.  His color is not good and he is sleeping a lot during the daytime.  He is very clear on the he is ready to pass on and go "home".  He is not scared of dying and has finally accepted the fact that he is going to go soon.  He told me last week that he knew this was our last Christmas together.  So we have really been putting some effort into enjoying every minute we can together.  I asked his nurse what we needed to be watching for so I would know when to call the kids in.  She gave me a list of 5 things and only one has he not done yet.  That one was a rattle in his breathing.  I asked if that was only when they had pneumonia and she said no that they all rattle.  I hope she was not talking about the death rattle you hear when they are passing away I really need more notice than that! But the other 4 are here already.  From everything I have read he is in what they classify as "the final stages".  It really seems to have whipped up on us! Some of the other signs are 1- shallow breathing (his is very shallow) 2- they run a fever (his comes and goes so I consider that a plus).  3- sleeping a lot during the daytime (and at night).  He sleeps a lot in the daytime and always seems so tired.  4- Is the one I  can't remember right now.  But the good thing I found out was that if you choose to go the natural way and not do all the machines you go peacefully in your sleep.  Many family members of many ALS patients say it is peaceful and easy on them.  But if they choose to do the machines/ trac/ and all these other things to extend their lives then they are the ones that get pneumonia, a P.E. (blood clot), heart attack and such like.  They are the ones who have a hard time.  When we found all this out Dan had filled out and signed his medical advance directive and his DNR a couple of days before. Now we are really glad he has decided to go all natural.  At first when he decided it I was upset but I agreed because it is his body and his choice.  I wanted that extra time with him. But I have to put him first because I love him.  I thought about it and decided for myself I would much rather have him go peacefully in his sleep that chocking to death with pneumonia.  He had a PE before and it was so painful he cried I can't imagine how much more so it must be to kill him.  And I have heard a heart attack really hurts!! I don't want any of that for this dear sweet man that I love.  Yes, this is hard but that is not part of this equation at all.  I want the best for him.  As long as he is alive I will pray for him.  But now that he wants to go back "home" my prayers have changed.  Now I pray that he will be happy (so he will want to be here still) and that he won't have any pain.  That is important to me.
Here is a couple of pictures of him with our latest grandbabies.

This is him with Jaclyn.  Our babies baby. She really loves him.

And this is him with 3 month old, Madison.  She will just sit in his lap and lay there forever.

He wants to go home

We had a tough week here.  It has been a few weeks since we had anything bad happen so I thought we were mostly stable and wasn't as worried as I could have been. Soooo what happens?  It all comes raining down on us.  His feeding tube got infected and then the next night- he had blood coming out of his penis.  A lot of blood! So here came the nurse again.  The next night he started aspirating and gagged for 15-20 minutes.  It was terrible!!!  Tracy, our LPN said we were testing her to see if she always wore her uniform even to sleep in.  Now every day some of his skin gives and he gets another sore. He only has 2 so far but is having problems with those two.  So a whole week has gone by and we had problems every day!!    Yesterday we were talking and he wants his DNR put back in place.  He said "I am ready to go home" Since we were sitting in our living room I can only assume he means back to live with Heavenly Father. He tells me he is tired and wants rest.  He doesn't say "to rest" he just says rest.  I know this has been a long battle for him (and for us all) and I think that he is ready as he says.  He has told me he has no reason to fear and I know this is true because he is a good Christian man who loves the Lord.  I asked him to try to stay at least thru Christmas so that the kids can have one more Christmas with their daddy.  But I don't know if he has the energy to try anymore.  It is so hard for him to even get a word out and he has a lot of pain now.  He hurt from 2 am until 630 when he finally gave in and let me give him some pain drops.  He usually doesn't want to take them but gave in this morning so I can only assume it was pretty bad.  We will be praying for God's will to be done.  But I sure don't like to see him suffer and I know the kids and Jeff don't either.  So we pray he won't suffer and that he can find some happiness in every day.

I want my life back

Yes I know this title seems selfish.  But I want to wake in the morning to hear Dan singing in the bathroom because he forgot he is home and not in a hotel in some other country.  I want to hear him whistling a happy tune as he is doing service for someone who stopped by because they needed something.  I want to walk along holding hands with my sweet husband while he looks over at me and smiles.  I want the bathroom door to open and the smell of MAN to come out.  I want to shave ( I do a terrible job and he is so good at it).  I want to sit in the quiet of my house with the smell of supper cooking while I wait for Danny to come home.  I want the things that we put off for later to be able to do.  I want the vacations we were going to take when we got older.  I want old age with a husband who loves me.  I want the Danny of old.  But that is not to be.  And I am sad about that.  But I still love Dan with all my heart.  I wouldn't trade every day together for anything.  I want every day I can with Dan.  I thank Heavenly Father every night for letting us have one more day together.  I am blessed and I know that but I sure would have enjoyed old age with Dan by my side. 
      Dan has run fever the last two nights and I thought I was paranoid before but I sure am now.  If I walk out of the room for anything I am scared to walk back in for fear that Dan is dead on the other side of that door.  Now I am terrified! I hate it when he feels bad.  But when he is sick it is so scary!! Every time we face something new it is just terrifying.  But we face it and get him well.  So we washed him and cooled him off, then gave him some aleeve.  And waited and waited.  Finally his fever broke and all I could feel was relief, a deep Ahhhh.  We had made it past another scare.  Then the next night it came back and we went thru it all over again.  Today he is looking good so we are praying that we are thru with that.  But I sure wonder why?? But that is part of ALS wondering what is coming next and why and how are we getting past it.  What do we need to do to keep Dan alive and well.  Every day a new adventure.

As the bad weather approaches

Many people have told us that as the bad weather comes in that ALS patients heath goes down.  But so far Dan is stabilizing.  I love that.  I thought we had a problem but it turns out that I was putting him to bed to close to brushing his teeth.  He always drinks water then and the water was causing the choking.  So now that I figured it out and shifted when I brush his teeth not more choking sounds and no more gagging.  So far so good.  We have decorated for Christmas and He is loving out new outside lights.  We got the projector lights so no climbing and not hard at all to start and stop.  I love it, too!  Our tree is up and lite and that makes him happy, too.  I think we are going to be okay but we are not going to get out much and that really seems to help when it is cold outside.