Saturday, January 23, 2016

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!

Tuesday, January 12, 2016

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.

Saturday, January 2, 2016

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?