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.