Communication is the key

Last week was a rough week.  I honestly didn't think I would make it.  Between the chest pains and the flu on top of the doctor putting my on a new medicine for stress and anxiety, which by the way makes me sleepy if I take it in the morning and keeps me up if I take it at night.  Either way I am blurry.  I feel like I am on drugs which I guess technically I am.  Anyway- My being sick got the message thru to my kids that I am not young and can't continue to do everything.  So I am having more help around the house which is super nice. 
     Dan is talking softer so I can barely hear him most of the time.  His head falls forward and when he picks it up it rocks all directions and he can only hold it up a short time.  It is super sad for him and I can tell it makes him tired really fast.  He also had his first catheter change out here at home and when he cried out I wanted to cry, too.  It was pretty awful.  He gets tired faster.  He has been getting sponge baths since it is so hard for him to stay up but asked tonight before bedtime if he could get a regular shower tomorrow so he would feel cleaner.  So we are going to try.  Last Saturday I had to hold him up while she washed him.  Not easy on either of us.  Some times his legs go to sleep and then getting him up is almost impossible.  His legs almost always stays bent now when he is kinda upright.  So he looks like an S.  And he has lost a lot of weight.  He is down to 194 from 244.  So they are watching his diet more.  There seem to be more changes than anything around here.  The one good thing is that he is not talking in paragraphs anymore, well not much anyway.  He mostly talks in one word or a sentence.  He also spells a lot which basically means that I start at A and he nods when I get that letter right and then we go to the next letter and I start guessing at A again.  I never realized how much all the letters rhythm until he got sick.  We were talking the other day about if he could get just one thing back what would it be.  I choose speech.  I think he would love his hands.  Both of us wanted a way to communicate.  I never realized how much time we spent just talking to each other.  Whether early in the morning in the bed, on the phone while he was away or late at night just before sleep.  I miss that more than anything. I want to know what he needs, if he hurts, how to help him.  All the things I took for granted hearing from him, I want to hear just one more time.  But it is not to be and I have to get used to it.  It took me months to get used to not hugging anymore.  Something we had done all the time but starting hurting him so we had to stop.  Or holding hands because his fingers cramped up.  They are not in a curved shape so we kind of hold hands again now.  Now we are adjusting to something new.  Every week something else new.  Some days  I think I can't learn one more thing and then I do.  You can feel so overwhelmed! Now he is tube feeding, which by the way you start with a half can just to see how they tolerate it and work up to a can and then more as needed.  Flush with 60 cc, one can and then flush again with 200 cc.  Jeff can do it as good as I can now.  Learn as you go.  Learn one thing at a time and you will surprise yourself by all you can do!

My hospital stay

I learned some interesting things this week.  One that if you are having chest pains you have to go to see the doctor.  Who will put you in the hospital.  Then you will endure a ton of test and come home a day later feeling gross and bruised.  In the meantime Hospice had to come in and take care of Dan.  Things I learned about hospice.  First for a year and a half after your spouses death you can get counseling for free.  Next in case of emergency they will come and do your husband's meds and supposedly anything else you ask for.  But for us they didn't even put his bipap mask on.  So my lesson of the week was you need to  teach everyone you know how to do his medicines, bipap, and anything else that you do.  We do things so without thought but make a list in case someone else has to do it. I had never planned to have chest pains (which turned out to be stress, as if I didn't know that).  I had never planned to not be available to help Dan with whatever he needs. As the lessons we have learned of old- Plan ahead because you don't know what will happen tomorrow.  What if you were hit by a bus walking across a street.  Be prepared!

Vacation

So we went on our first vacation since he became so disabled.  It was truly a learning experience.  I learned so much and a lot of it I can't even put into words.  First- No one else knows how to take care of Dan so even if I go where they want to take care of him there is only so much they can do because it has now become second nature so I do a lot without thinking about it and I will leave it off a list if I am asked to write one.  Second- if someone else volunteers to get him up, dressed and feed him breakfast let them.  What a blessing that was.  I realized that it was the first time in over 6 months that I didn't do it or at least have a big hand in it. 
Third- Let others serve him.  It helps them while giving you time out.  What a blessed time it was. 
No they can't do everything I can but my goodness what a relief it was to not have to do so much.
Fourth- When traveling carry everything (medicine wise) you can ever think he might possibly need.  There is a LOT so take a van with lots of space.  Take both the electric wheel chair and the manual one.  The manual one is much easier to get in other people's houses who have stairs or even a big enough bump that the electric wheelchair can't get in. So you can visit everyone you want to. 
Fifth - give yourself plenty of time to get there because it is going to take longer.  Much longer than you plan.  Plan to spend the night somewhere.  We went 10 hours one day and it was a long day and we were all way more tired than you can imagine. 
Sixth- lower you expectations.
Seventh- Get a hotel room with a disability setup.  Make sure it has a roll in shower because the transfer tub is nice but I could have never gotten Dan in there. 
Eighth- If you have hospice let them know a week in advance (or more) because they will set up hospice care for you wherever you go and you will still have support.
Now since I have gotten home I have learned that if you have anything on the inside of the tube of his catheter then it can clog up the works and cause a major blowout and then the pee will flow in his pants instead of down his tube as it is supposed to. After the blowout the bag will fill up quickly because it is now flowing but at that point change out the tube and bag so it won't happen again. 
Last but not least, you know how everyone has a "I know someone who died of ALS" story.  I got one today that gave me hope.  When it first started I was so sad.  I am not sure why anyone wants me to hear how their family member suffered and died. But they all do.  Today's was good.  The father hadn't been suffering at all and just died in his sleep one night.  No pain no agony, no pneumonia, no anything bad he just went.  So I am now praying that is how Dan goes.  What a blessing that family had.  Every time Dan says he hurts wherever it hurts me so much that my stomach tightens and I feel a little like I am dying inside.  It is horrible to see and feel.  Now some people think I am so great because I am still here and still trying to do everything I can do. But that don't see me in my weak times.  Some times I just want to curl in a ball and block out the world or just cry until I feel better.  But I know it will never happen.  In the beginning I thought that I wanted to go first so I didn't care about me or my life anymore.  I had to learn how to be careful again.  I am just a human in a horrible position.  One that I would never wish on anyone.  Some days I can just barely survive the day.  Then there are days like today when for just a minute after I wake up I think it has just been a bad dream and that he will be okay and then I open my eyes and start another day.  Just hang in there no matter what.  That is what I keep telling myself.  I will make it thru this, too.  For this to shall pass.

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.